It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

  • Lidocaine and Ketamine

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 12-20-2008, 08:22 PM   #31
    Michelle94
    Senior Veteran
    (female)
     
    Michelle94's Avatar
     
    Join Date: Sep 2007
    Location: Warminster Pa
    Posts: 521
    Michelle94 HB User
    Re: Lidocaine and Ketamine

    tigerlily11,
    I started with the rsd in my right hand.. Well it actually started from herniated dics.. but I didn't start with the RSD symptoms until it hit my right hand. I experienced burning in the palm., minor swelling, color change.. I felt like pin were in my finger tips.. In about one month in went to the left hand.. same symptoms.. The burning was horrible.. I use to work at a drs office and in between pts I would hold a frozen water bottle to stop the burning.. Not knowing that cold is the worst for RSD.. My palm of my hands looked deep purple and red.. Looked like I had a glove on..
    Slowly it started in my feet well knees down.. I had a weird sensation.. electrical shock feeling.. very sensitive to my legs, but not if you touch them only if I would drop something on my foot etc.. In two yrs the pain just went through my body turning into a flu like feeling.. deep bone pain down my thighs.. My face would burn.. It comes and goes.. I wouldn't sleep at night.. I felt the erge to move around all the time.. Come to find out that, that was muscle spasms. I still get that... Usually I feel most of it the minute I sit down.. I would walk for hrs cause I was afraid to sit down... Then my feet started swelling only the bottoms, color change burning.. I couldn't even touch the floor.. You can tell when it spreads.. You get the electrical shocks, just a weird feeling I cannot explain...
    I want you all to know.. I am here for all of you... I know ita a long road.. but hang in there.. Never think negative.. It just won't get you anywhere.. Always think you will beet this.. Never let yourself get in that dark hole.. Its so hard to get out.. Talk about it as much as you need to.. Its important too..
    Love you all and thinking of you
    Michelle

     
    Sponsors Lightbulb
       
    Old 12-21-2008, 12:24 AM   #32
    tigerlily11
    Senior Member
    (female)
     
    tigerlily11's Avatar
     
    Join Date: Aug 2007
    Location: ca, usa
    Posts: 197
    tigerlily11 HB User
    Re: Lidocaine and Ketamine

    Hi all,
    This board keeps me sane...thanks for all your input and information and the personal sharing of your symptoms, insurance challenges, etc....
    Michelle, knowing you had burning in your face doesn't make me feel so alone..It is scary and how do you explain that to someone who hasn't experienced it!! You even start to question your own sense of pain and burning..
    The hardest part for me (aside from the pain and uncertainty of the future) is the increasing immobility becasue of the terrible nerve responses in the bottom of my left foot. It keeps me from walking..I may have to up the Neurontin, but I can't be falling asleep at work!! Also with the unpredictablility of the pain and burn, it's so hard to plan anything.. I do need to stay positive because the alternative will lead to nowhere...I'm so grateful to all of you.
    Tigerlily xo

     
    Old 12-21-2008, 06:09 PM   #33
    Sandy325
    Senior Member
    (female)
     
    Sandy325's Avatar
     
    Join Date: Oct 2008
    Location: Warwick, RI USA
    Posts: 126
    Sandy325 HB User
    Re: Lidocaine and Ketamine

    Hi

    We've had unsettled weather here in RI for several days - including a new foot plus of gorgeous snowfall. I've been singing Bruce Springsteen's "I'm on Fire" in my head the whole time! My legs, my face, my back, my hands, my feet, you name it! The heat is everywhere! This is the worst heat I've felt so far and the first time I've felt it in my face, it's kind of creepy.

    I'm really glad that others have noticed it, too. Hopefully the weather will clear for a few days and I'll get a break.

    Have a good one, Sandy

     
    Old 12-29-2008, 09:42 AM   #34
    Sandy325
    Senior Member
    (female)
     
    Sandy325's Avatar
     
    Join Date: Oct 2008
    Location: Warwick, RI USA
    Posts: 126
    Sandy325 HB User
    Re: Lidocaine and Ketamine

    I sent an e-mail over the weekend to Beth Israel Hospital in Boston and they called me back today. The woman told me that their PM clinic does offer Lidocaine and Ketamine infusions. I need to get the paperwork together (refererals from my other docs, etc) and fax it up there.

    My 2nd SGB is scheduled for Jan 8 in Boston at a different hospital. My husband and I will both have to take a full day out of work to go there. The first block did work, but only for a little more than 24 hours for some of my symptoms. It's been 5 days and now all of my symptoms are back. The infusions sound like a much better alternative.

    My injury is WC, and so far the insurance company hasn't even approved the blocks. I'm sure there is going to be a battle over approval for an infusion as well. But I am delighted to find out that they are available here in southern NE.

    Sandy

     
    Old 12-29-2008, 10:57 AM   #35
    tigerlily11
    Senior Member
    (female)
     
    tigerlily11's Avatar
     
    Join Date: Aug 2007
    Location: ca, usa
    Posts: 197
    tigerlily11 HB User
    Re: Lidocaine and Ketamine

    Hi Sandy,
    Good for you for researching and finding out who does the infusions!! I have found that we really have to advocate for ourselves and take the lead in our treatment.
    Mine is a WC case also and the insurance has denied certain treatments such as orthotics and orthopaedic shoes ..which is why I'm still wearing flip-flops (I wear them to work with socks !) because no other shoe works for me and is too painful..The next time I go to my foot specialist I am going to ask him where to get them and try and pay for them myself..I was told I can't use my regular insurance for this work related injury....
    If you do the infusion, will you use your own insurance or try and get it authorized by WC? and will your WC pain management doc oversee it or your United Health docs? The good news is that you have found somewhere closeby where they are done!!! Good luck with your SGB on the 8th!! It could be the turning point in your treatment!!
    Take good care!!!
    Tigerlily

     
    Old 12-29-2008, 11:20 AM   #36
    Sandy325
    Senior Member
    (female)
     
    Sandy325's Avatar
     
    Join Date: Oct 2008
    Location: Warwick, RI USA
    Posts: 126
    Sandy325 HB User
    Re: Lidocaine and Ketamine

    Hi Tigerlilly,

    I don't know what I will do about insurance yet. I am still hoping that the IME report will help the claims people at the Hartford to change their minds about authorizing the blocks. Eventually United Health might catch on that I am charging WC related expenses through their plan, not sure what will happen then. The IME doctor's secretary told me that the report was being faxed today. I plan to call my claim's rep later (since my lawyer has become useless lately). I do know that there is no way my husband and I can afford to pay for the cost of a 5 day in-patient infustion treatment, so I am going to have to keep fighting.

    Sorry you've got problems with your foot. Do you have an attorney? Before I was diagnosed with RSD my attorney advocated for me often (now I think he's bummed that he's not going to make a quick buck on my case since it's dragging out so long). It might be worth your while to see if you can get a lawyer to help you get the tools you need to continue to work.

    Thanks very much for your reply, take care, Sandy

     
    Old 09-20-2009, 06:38 AM   #37
    betsykk
    Newbie
    (female)
     
    betsykk's Avatar
     
    Join Date: Sep 2009
    Location: VA
    Posts: 5
    betsykk HB User
    Re: Lidocaine and Ketamine

    My 18 yr old daughter has had RSD in her hand/arm for 6 months. She has been on many medications with no relief an has had several blocks, both ganglion and brachial. Docs now want to do the SCS. I am a little nervous (actually a lot) and have been reading up on Ketamine/Lidocaine. Is anyone aware of anyone in the Va region that does this procedure?
    I will be making calls to PM clinics on Monday but am hoping someone has had some success and can offer me guidance.
    IF you could go anywhere (and a 2 yr wait was not an issue!)...where would you go?

    Thanks!
    Liz

     
    Old 09-20-2009, 06:05 PM   #38
    sharon1030
    Senior Veteran
    (female)
     
    sharon1030's Avatar
     
    Join Date: May 2002
    Location: NY
    Posts: 3,176
    sharon1030 HB User
    Smile Re: Lidocaine and Ketamine

    Hi Liz,

    Welcome to the board. I'm sorry your daughter has RSD though.

    Since you're in VA (and you asked if we could go anywhere, where would we go), I'd tell you to try Manhattan. I go to the Hospital for Special Surgery (***), which is rated #1 in orthopedics in the country. They have a pain management department there too. There's also New York Hospital which is across the street from *** which also has a pain management program and is very good as well. I know nothing about anything in VA, but if you can't/don't want to travel too far, I'd try a large teaching hospital in your area. Call them and see if they have a pain management department.

    I don't have an SCS. Luckily, I failed that trial. I've read and heard too many stories about SCSs not going well that I consider myself lucky that it didn't work for me. I do have a pump though (have had it for 8 years) which helps me a lot.

    If I were you, I'd get another opinion from a good teaching hospital before I tried the SCS.

    Good luck to your daughter, you and your family.

    Sharon

     
    Old 09-28-2009, 09:43 PM   #39
    susanb17
    Junior Member
    (female)
     
    susanb17's Avatar
     
    Join Date: Aug 2008
    Location: binghamton, ny usa
    Posts: 15
    susanb17 HB User
    Re: Lidocaine and Ketamine

    Quote:
    Originally Posted by betsykk View Post
    My 18 yr old daughter has had RSD in her hand/arm for 6 months. She has been on many medications with no relief an has had several blocks, both ganglion and brachial. Docs now want to do the SCS. I am a little nervous (actually a lot) and have been reading up on Ketamine/Lidocaine. Is anyone aware of anyone in the Va region that does this procedure?
    I will be making calls to PM clinics on Monday but am hoping someone has had some success and can offer me guidance.
    IF you could go anywhere (and a 2 yr wait was not an issue!)...where would you go?

    Thanks!
    Liz
    HI,
    I've had the SCS since 2006, and it has helped me ALOT. I would also go to NYC, as I traveled there from upstate, but well worth the trip. You sound like you're on the right track, but I would definitely try the SCS before any infusions, especially since you can try it without implanting it! Let me know where you go and my thoughts and prayers are with you and your family.

     
    Old 09-29-2009, 02:19 AM   #40
    RoseinSanDiego
    Senior Member
    (female)
     
    RoseinSanDiego's Avatar
     
    Join Date: Apr 2008
    Location: poway
    Posts: 200
    RoseinSanDiego HB User
    Re: Lidocaine and Ketamine

    Hi Sharon,
    I was just reading your post. Can you tell me what type of pump you have? I get VERY nervous because I'm pretty sure it has to be implanted, right? Can you also tell me where your pain is with the pump from 1-10, ten being the worse? And then where was the pain without the pump. I know it's lots of questions, but do you work? My RSD is in my feet and legs and I've had it 2 years.
    I'm unable to sleep so I figured I'd check out the boards.
    Take good care,
    Deb

     
    Old 09-29-2009, 08:14 AM   #41
    Sandy325
    Senior Member
    (female)
     
    Sandy325's Avatar
     
    Join Date: Oct 2008
    Location: Warwick, RI USA
    Posts: 126
    Sandy325 HB User
    Re: Lidocaine and Ketamine

    I just found out last Friday that I can get ketamine at St. Luke's in NYC, the *** turned me down, said they weren't taking on any new RSD patients. I later found out they don't take Worker's Comp. One of the most highly regarded ketamine doctors is Dr. Schwartzman at Drexel in Philly, but the waiting list is 18 months or so. You can get in much sooner than that everywhere else.

    I would never consider a SCS. Too invasive and risky. I've heard way too many horror stories.

    The best of luck to your daughter. I REALLY hope that she feels better soon. It's awful when youngsters get sick, I'm 48. It's still stinks big time. But at least I've lived a good chunk of my life.

    Ask away if you any more questions. I'm happy to help out. I've had 7 stellate ganglion blocks, 3 lidocaine infusions, and 1 lumbar block to date. My treating physician is Joseph Reyes at Caritas St. Elizabeth's in Boston, Ma. I live in RI.

    XOXOX Sandy

    Last edited by Administrator; 01-14-2015 at 02:08 PM.

     
    Old 09-29-2009, 06:44 PM   #42
    sharon1030
    Senior Veteran
    (female)
     
    sharon1030's Avatar
     
    Join Date: May 2002
    Location: NY
    Posts: 3,176
    sharon1030 HB User
    Smile Re: Lidocaine and Ketamine

    Hi Deb,

    I've had RSD for 23 years and have used the pump for 9. I had many treatments before, including a sympathectomy and SCS trial and none of them did anything to help so that's when I went to the pump. I have morphine and bupivacaine in my pump and I swear the bupivacaine helps more than the morphine.

    Yes, the pump is implanted. I had my second pump implanted this past April after the catheter moved from the intrathecal space, but the first 8 years was GREAT. The surgery itself is no big deal (at least, with all the surgeries I've been through, it was the easiest)...go home the same day. I honestly don't know where my pain was before the pump, but I can tell you that I was taking 600 mgs of MS Contin before the pump and still had pain. The oral meds made me depressed which I wasn't really aware of until I got off them when I got the pump and I became happy again. Now, I'd say my RSD pain is about a 2-3 on the scale. I have other mechanical problems with my knee which cause pain and this doesn't seem to be helped with the pump (I'm sure it is a little, but...). I'm having knee surgery on Tuesday so hopefully that will take care of some of that pain.

    I haven't ever really worked as I got RSD when I was 15. I did go to nursing school for a year, but had to stop when I realized the RSD wasn't going away and I couldn't/can't walk without crutches. I've been taking care of my niece and nephew 3 days per week for the past year. My sister's a teacher and went back after 4 years of maternity so I started this when she went back to work. It's definitely tough, but I do it because I LOVE them. I don't think I could do this forever though. I haven't driven in about 14 years. I decided that with the meds plus the atrophy in my legs, it would be smart to stop doing that for now. I can always go back, but I figure if I ever got into an accident, it would be my fault whether it actually was or not.

    I hope this helps answer some of your questions. I love my pump and hope it works for me for the rest of my life. I only wish others could get as much benefit as I. It seems that it works for some and not for others. You do go through a trial so you'll most likely know if it would work for you before you have to make a decision. Good luck.

    Sharon

     
    Old 09-30-2009, 03:40 AM   #43
    cricket183
    Junior Member
    (female)
     
    cricket183's Avatar
     
    Join Date: Sep 2009
    Location: Texas
    Posts: 16
    cricket183 HB User
    Re: Lidocaine and Ketamine

    There have been so many good responses and replies I almost didn't post but I decided to go ahead and share my experiences with Ketamine, Lidocaine, and SCS. Yes, I have tried all three. I have had RSD for 4 years now, diagnosed for 3. My RSD started with a herniated disc at C4/C5. The C5 nerve root was entrapped and led to permanent nerve injury. In Nov. 2006 I had surgery to correct the disc but unfortunately I had already developed RSD from the injured nerve. In April of 2007 I went on short term disability from my job as a RN because the pain was so severe and I could not take medication at work because they had a no narcotic policy even though I was not providing direct patient care. At first the RSD just affected my right arm, shoulder and neck. In Aug. 2007 I had a Spinal Cord Stimulator placed and by Nov. I was off all medication and was able to go back to work. By Feb 2008 my stimulator was no longer helping with the pain and despite multiple trips to my surgeon and the manufacturer's rep for adjustments we could not get coverage where I needed it. My RSD also began to spread to my chest wall, left shoulder and arm and began affecting my heart rate. The end of Feb 2008 I was hospitalized to get my pain under control and fired from my job because I was put on narcotics again. (Nice of them, huh?) We tried stellateganglion blocks, turning off the SCS for a month then turning it back on. It still didn't help the pain. (Nor has it ever since that time). In Feb. 2009 I found a doc in Dallas that does Ketamine and Lidocaine infusions (they did them one after the other same day) and we set up an apt. (We live 120 miles away.) The first time we did a 3-day infusion. It worked for about a week and reduced my pain by 25%. The second one in March lasted about 6 weeks and I had about a 40% reduction in pain. Unfortunately the last one, in May, helped less than 24 hours and I had only a slight reduction in pain. The infusions are expensive and we used up most of our savings account. Our insurance paid a portion...doctors fees, monitoring equipment, ect. But they did not pay for the medication itself because it was considered "experimental" treatment. The treatments themselves make you feel extremely spacey. At the higher doses there were times I would black out and they would slow down or stop the infusion and I would come back out of it and be extremely confused. I knew who I was but that's about it. I didn't know where I was or what was happening or anything like that. Luckily it clears within 5-10 minutes and then it's over and you feel normal again and they are able to restart it at a lower rate. I'm glad I tried it and I enjoyed the six weeks that it did work. Same with the SCS. It gave me six month with less pain. But ultimately the choice is yours.

    Cricket

     
    Old 10-01-2009, 12:45 AM   #44
    RoseinSanDiego
    Senior Member
    (female)
     
    RoseinSanDiego's Avatar
     
    Join Date: Apr 2008
    Location: poway
    Posts: 200
    RoseinSanDiego HB User
    Re: Lidocaine and Ketamine

    Cricket,
    Thanks so very much for such a well written post. It's so very hard to decide what to do, ya know? Sometimes I think I'll just wait; othertimes I think I want to start stronger pain meds. Othertimes I get kinda angry that I'm stuck with this stuff called RSD.
    Am going to my first therapy appointment this Friday and I'm really hoping it helps me.
    It's late so need to run. Again, thank you so much for sharing your experiences.

     
    Old 10-02-2009, 12:58 PM   #45
    Sandy325
    Senior Member
    (female)
     
    Sandy325's Avatar
     
    Join Date: Oct 2008
    Location: Warwick, RI USA
    Posts: 126
    Sandy325 HB User
    Re: Lidocaine and Ketamine

    Cricket,

    I'm sorry that the ketamine and the SCS didn't work for you. What are you using now? Do meds control your pain? I hope that things work out for you.

    Sandy

     
    Closed Thread

    Related Topics
    Thread Thread Starter Board Replies Last Post
    TENS unit, Neurountin and lidocaine cream penybobeny Pain Management 9 11-12-2006 02:39 PM
    Lidocaine Puch via IV over 6 hours - Anyone ever heard of such a thing? mngirl Pain Management 3 04-02-2005 08:04 AM




    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 07:52 PM.





    © 2021 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!