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 11-18-2008, 05:16 PM   #1
    Michelle94
    Senior Veteran
    (female)
     
    Michelle94's Avatar
     
    Join Date: Sep 2007
    Location: Warminster Pa
    Posts: 521
    Michelle94 HB User
    Lidocaine and Ketamine

    I was just wondering, Have any of you ever tried the lidocaine infusions ( not the patch), or the ketamine infusions..... I've been on this board for a long time now and haven't heard much about it.....
    I had the lidocaine infusions.. Three times.. Each time I had it, it made my quality of life much better.. I still take the Neurontin and tylenol with cod.. only when I am in a lot of pain..
    I see DR Schwartzman.. I am just wondering if he is the only dr that does these treatments..
    I wish all of you could have this chance.. I hate reading about all these meds you all are taking.. I went from not walking to going back to work.. I have met so many pts while I was in the hospital who has had these treatments and have improved like me..
    About a yr ago I was seriously thinking about going for disability.. something inside me just would not let me.. I just could not see myself disabled.. I wasn't ready for that.. I am only 42. A whole life a head of me..
    Please don't get me wrong.. I still have the RSD ( all four extremities).. I still have pain.. But I am able to function.. There are a lot of days where I could just kill the world.. but I keep going...
    Work has made such a difference for me.. Mentally I am so much better.. I figured if I have to stay home in pain.. I my as well get paid for the pain.. Nothing is different for me either way with working, regarding the pain..
    For me, sitting down not moving around flares my RSD up.. and Sitting down does irritate my herniated dics..
    I still get the swelling in my hands along with the burning.. but I am ok with working still..
    I hope you all can have this chance like I did.. and wish you could talk to your drs about it..
    Just a thought.. I feel so bad listening to all of you.. I guess I should feel lucky.. Please think about it.. Ask your drs.. Hey what the heck.. couldn't hurt...
    Michelle

     
    Sponsors Lightbulb
       
    Old 11-18-2008, 08:08 PM   #2
    Gaollan
    Senior Veteran
    (female)
     
    Gaollan's Avatar
     
    Join Date: Jan 2005
    Location: FL
    Posts: 685
    Gaollan HB UserGaollan HB UserGaollan HB User
    Re: Lidocaine and Ketamine

    I'm so glad you can do so much and still deal with what rsd still gives. I keep thinking rsd is the gift that keeps on giving. ROFL

    For me there are no other options. No health insurance and no money = no treatment options. I'd love to be able to try the infusions and if they worked well enough I'd get back to my dream job of being a cook and finally getting somewhere in life. It won't happen so I try not to think about it for myself, but am so happy for others who have the ability to do things and hopefully get back out there again.

    Hugs,

    Karen

     
    Old 11-19-2008, 06:07 AM   #3
    rayefaye
    Senior Veteran
    (female)
     
    rayefaye's Avatar
     
    Join Date: Feb 2007
    Location: princeton, nc usa
    Posts: 897
    rayefaye HB User
    Re: Lidocaine and Ketamine

    For me, I have the insurance but where I live there are no RSD specialist. If I want to find one, I would have to drive a long way to see one. Also I don't know of any doctors in NC that gives the Ketamine treatments. I am lucky that so far the medications I take help out alot even though I still have bad days especially when the weather changes.

    As far as working goes, I haven't worked in 5 1/2 yrs now and so which I was able to work. I'm now 44, I was 39 when I got dx'd with RSD even though I has suffered for a very long time before I got dx'd. I recently called the Vocational Rehab out trying to work part-time. They have a plant that does light weight manufacturing stuff that helps people with disabilites earn money. I do draw disability but I interested in maybe working part-time to earn a little extra money. So hopefully it won't be long before I will be able to work at least a little bit. Right now they have a waiting list so hopefully it won't be long before they call me to go to work. My family thinks it's a good idea so I won't be stuck at home all by myself all the time. My RSD is as bad as was in the begining and I'm adjusted to my medications. So I hope to be working soon.
    __________________
    RSD (Reflex Sympathetic Dystropy)
    Cervical Dsytonia- severe muscle spasms in the neck
    Arthritis

     
    Old 11-19-2008, 12:13 PM   #4
    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 have been worried since I first started reading these boards that my doctor has discouraged me from getting any infusions or blocks. He feels that the risks of a block outway any potential benefit (either because he thinks I've had the syndrome too long or he doesn't think I have RSD, even though he's diagnosed me with it and I have so many of the symptoms). And I have recently heard that ketamine is only being offered right now in Philly by Dr. S, because a few recipients (the higher risk ones) have become severely ill.

    I am also interested in hearing what other people on this board think of these modalities.

    Sandy

     
    Old 11-19-2008, 05:03 PM   #5
    Michelle94
    Senior Veteran
    (female)
     
    Michelle94's Avatar
     
    Join Date: Sep 2007
    Location: Warminster Pa
    Posts: 521
    Michelle94 HB User
    Re: Lidocaine and Ketamine

    Karen,
    I am just wondering.. Have you applied for medicaid.. Thats what I have.. and they cover my treatments?
    rayefaye,
    NC not to far away from Philly.. Its well worth the drive if they can do the treatments for you... I know Dr S has a long waiting list.. I waited two yrs for my appt. But I am glad I waited. and in the mean time I just con't with my PM dr.
    It also doesn't hurt to have your dr call DR S.. Thats what my orthopedic dr did when he dx me with RSD...
    AS for the Ketamine treatment... I know a lot of pts who have had it and have had no problems at all.. Both treatments make you very tired.. But they are very safe.. your watched very closely..
    I was just wondering.. Thats to all for responding..
    Michelle

     
    Old 11-19-2008, 05:41 PM   #6
    rayefaye
    Senior Veteran
    (female)
     
    rayefaye's Avatar
     
    Join Date: Feb 2007
    Location: princeton, nc usa
    Posts: 897
    rayefaye HB User
    Re: Lidocaine and Ketamine

    Philly is an 8 hr or more drive from where I live. I know because there's where my husband's from and we attended his funeral a few yrs ago. Unfortunately, I can't drive nor ride for very long periods of time. When I do, it causes me alot of pain especially in my neck and shoulders. Also after riding or driving for long periods and I get out, it fells like the blood circulation has been cut off to my legs. It also leaves me in a great deal of pain so I try not to go nowhere that requires more than two or three hrs driving time. Also I've done alot of research on the Ketamine treatments and I really don't like some of the things I read about it. Also I know that they can be very expensive and sometimes insurance doesn't cover the cost of the Ketamine treatments. So I don't have that kind of money to cover the cost of treatments plus the cost of the drive to Philly each time for the treatments. So far I've been pretty lucky and the medications I'm on now pretty much keeps my pain levels down. The only time I really have any bad days is usually due to the weather. I am glad to hear they work for you and that you live close enough by to be able to receive them.
    __________________
    RSD (Reflex Sympathetic Dystropy)
    Cervical Dsytonia- severe muscle spasms in the neck
    Arthritis

     
    Old 11-19-2008, 07:26 PM   #7
    Gaollan
    Senior Veteran
    (female)
     
    Gaollan's Avatar
     
    Join Date: Jan 2005
    Location: FL
    Posts: 685
    Gaollan HB UserGaollan HB UserGaollan HB User
    Re: Lidocaine and Ketamine

    I don't qualify for medicaid or anything like that because my hubs makes too much money. Been that way since the mid 1990's. It's almost like you have to work a part time job making next to nothing to qualify for anything! But, I know a part time job doesn't get the bills paid. It doesn't even cover our rent never mind all the other bills.

    Hugs,

    Karen

     
    Old 11-20-2008, 09:58 AM   #8
    jessemom
    Senior Member
    (female)
     
    jessemom's Avatar
     
    Join Date: Jun 2006
    Location: Long Island, NY
    Posts: 121
    jessemom HB User
    Re: Lidocaine and Ketamine

    Hi Karen, Michelle, Sandy

    I've read about Ketamine so many times on this board and it sounds like a miracle. What is Ketamine? How is it delivered? Is it covered by most insurance?

    I doubt my PM prescribes it. I'm sure he would have suggested it long ago but I'm still curious. It may be worth looking into.

    Thanks for the info!
    Vicki

     
    Old 11-20-2008, 12:24 PM   #9
    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 Vicki,

    From what I understand, Ketamine is a hallucinatory (sp?) drug that is used to treat CPRS. It can be administered on an inpatient or outpatient basis ("awake method") for a number of days, or with a patient put into a "coma." I think the comas are only done in Germany and Mexico for now because they are not approved by the FDA. There aren't a lot of doctors that administer Ketamine in the US, the most famous is with Drexel in Philly and another noted one is at the University of South Florida. There are probably more (in Arkansas maybe?) but I'm not sure. Ketamine has been credited with putting some real bad cases of RSD into remission. I've read that a common street name for the drug is "Special K" (i.e. - LSD). Recently I heard that it's use has been temporarily put on hold because a few recipients became very ill from it, but I don't know if that applied to just the comas or the awake method also.

    If you do a google search on Ketamine and CRPS and/or RSD I bet you will get some more info.

    Good luck and I hope you are having a nice day.

     
    Old 11-20-2008, 03:58 PM   #10
    jessemom
    Senior Member
    (female)
     
    jessemom's Avatar
     
    Join Date: Jun 2006
    Location: Long Island, NY
    Posts: 121
    jessemom HB User
    Re: Lidocaine and Ketamine

    Interesting...thanks Sandy

     
    Old 11-20-2008, 03:59 PM   #11
    Gaollan
    Senior Veteran
    (female)
     
    Gaollan's Avatar
     
    Join Date: Jan 2005
    Location: FL
    Posts: 685
    Gaollan HB UserGaollan HB UserGaollan HB User
    Re: Lidocaine and Ketamine

    Yes ketamine is also known as 'special K', not many know ketamine is a drug used primarily for animals as an anesthetic. You're correct the coma's are only done in Germany and Mexico. You go through Dr. S for Germany and Dr. Kirkpatrick for Mexico. They only send the very worst cases. The ones who have been on every drug out there and have "maxed out" on doses of the strongest meds available and have been through every available treatment and as a result are bed bound with no life,pretty much.

    Ketamine coma is not a approved treatment in the US because not enough is really known about the long term effects of it on a person and from what I've read, the research papers and stuff, the coma hasn't shown itself to be effective enough. The last thing I read said of the 38 patients sent to Germany, do well initially for a few it lasted 6 months BUT the pain returns in 55% to 60% of cases. That is more than half and for many the risk isn't worth it.

    The ketamine infusion that is done over 5 days is done by Dr.S and Dr. Harbut who was in Arkansas but I believe is in Arizona now. The treatment is considered experimental and I haven't heard of any insurance company who will pay for it to be done. I know it costs a few thousand dollars as it has to be done inpatient in the hospital. They hook you up to an IV and increase the dose over the first couple of days before going back down and then take you off the IV the last day. Then you stay in town for a few more days being monitored by the Dr as to how you feel and pain level,etc. Then you can go home. I think in all you go a few days before the treatment and stay 3-5 days after so you can see how the $$ would rack up quick never mind the hospital and stuff added in.

    Hope this helps answer things.

    Hugs,

    Karen

     
    Old 11-21-2008, 03:40 PM   #12
    martra1025
    Member
    (female)
     
    martra1025's Avatar
     
    Join Date: Aug 2006
    Location: pennsylvania
    Posts: 95
    martra1025 HB User
    Re: Lidocaine and Ketamine

    Michelle,
    My husband finally saw Dr. S last month after a year and a half wait.
    He diagnosed my husband with full body RSD. Not good. Dr. S. recommended the inpatient ketamine. When we went to schedule we were told the wait was years. Any idea how many years? This is workers comp so I doubt they will pay for it. The scheduling person said the Dr. and hosp. will need a pre approval and wc does not pre approve anything. They get a bill and then decide if they want it is reasonable. Is ketamine an approved treatment for RSD or is it considered experimental? When we read the report from Dr. S it said that unfortunately the coma is probably the only thing that will work for my husband.

    We are in the process of getting SS. We have an appeal hearing coming up any day now. Does that mean he will also get medicaid? And will medicaid pay for the inpatient ketamine? I wonder why Dr. S didn't suggest the lidocaine. We would like to try hyperbaric oxygen therapy. There is a place near us that does it. 40 treatments for RSD at 150 bucks a treatment so that's not going to happen. What about pain pump?


    Thanks,
    Tracy

     
    Old 11-21-2008, 05:46 PM   #13
    rayefaye
    Senior Veteran
    (female)
     
    rayefaye's Avatar
     
    Join Date: Feb 2007
    Location: princeton, nc usa
    Posts: 897
    rayefaye HB User
    Re: Lidocaine and Ketamine

    Hi Martra, reguarding your question about medicaid and SS depends on he if he receives SSI or SSDI. After two yrs of being on SSDI, you will receive Medicare. If your husband makes under a certain amount he can receive both Medicaid and Medicare. If he makes over that amount then he will receive Medicare part A which is hospital insurance. He will have to pay for Medicare part B which takes care of doctor visits and other medical needs. Also he will have to pay for part D which covers prescription costs.
    __________________
    RSD (Reflex Sympathetic Dystropy)
    Cervical Dsytonia- severe muscle spasms in the neck
    Arthritis

     
    Old 11-22-2008, 05:00 AM   #14
    Michelle94
    Senior Veteran
    (female)
     
    Michelle94's Avatar
     
    Join Date: Sep 2007
    Location: Warminster Pa
    Posts: 521
    Michelle94 HB User
    Re: Lidocaine and Ketamine

    Tracy,
    That I can't answer.. I don't receive SS or SSI. but I do receive medicaid..
    Your are right when it comes to the waiting list.. I was acutally scheduled for the ketamine for February.. I just canceled it.. I was going to go for the physco eval Nov 8th.. but I canceled that also.. The waiting is horrible.. The problem is he see pts from all over the US... That is a lot of people.. This is why I wish there were other drs out there that would do these treatments.. I know its experimental, but they've been doing this for a very, very long time now...
    I basically have full body also.. That is really weird that he didn't offer you lidocaine.. I know its a waiting list for that also.. Maybe you could ask him.. if he would try it.. Wow.. I rather go that route first. before the ketamine.. It has done wonders for me.. Didn't happen over night but I am so much better then I was...
    I would put a phone call into him.. Ask for him to call you back.. He will, be's pretty good with that.. May not be same day but he does.. You could also ask his nurse.. She really helpful...
    I am not saying that the RSD is gone.. It is still there and it has spread through out in the past 7 yrs.. but pain wise I am better.. quality of life I am better.. and of course mentally I am better..
    As far pain pump... I never went that route.. I guess I just got lucky with having the lidocaine.. and never needed to go that far...
    You see PM in abington right?
    Have you applied for medcaid yet? You can do that without SS, SSI.. I did... It comes into affect pretty fast.. Actually you can do it right online.. It doesn't hurt to try..
    This WC crap just makes me so mad.. I don't have WC but mine was through auto insurance and I went through some of the same stuff.. Everything little thing has to be approved.. Meds etc.. You do know that DR S doesn't work with any court cases, WC etc.. but... He will send all reports to your Primary, PM.. He will not testify for SS, SSI.. Thats what stinks..
    What meds is your hubby taking right now?
    Michelle
    HUGS. I know that feeling your all going through. and my heart goes out to you... I wish I could help..

     
    Old 11-25-2008, 06:57 PM   #15
    martra1025
    Member
    (female)
     
    martra1025's Avatar
     
    Join Date: Aug 2006
    Location: pennsylvania
    Posts: 95
    martra1025 HB User
    Re: Lidocaine and Ketamine

    Hi Michelle,

    I know Dr. S doesn't testify. His office did send us the report really fast. My husband currently takes Fentanyl patch 150 mg every 48 hrs. He can also take dilaudid if he needs it but he generally doesn't like to take it. He also takes Cymbalta 60mg daily. We were seeing pain mgmt. in Abington but switched to someone closer in July. Abington is 30 miles from us and all they were doing was refilling prescriptions. We are going to switch back because the new PM doc keeps pushing Spinal Cord Stimulator which he had and only worked for 3 months. Abington acted like they cared even if they didn't know what more to do. So there's a waiting list for lidocaine too? Treatments that might work have ridiculous waiting lists. Ok, I'm done venting now. Is medicaid medical assistance? If so, we have applied for that several times and for various reasons we don't qualify. We did qualify for "adult basic", whatever that is, but there is a waiting list. We just applied for Medical Assistance again last friday. We'll see what happens.

    Last edited by martra1025; 11-25-2008 at 07:01 PM.

     
    Closed Thread

    Related Topics
    Thread Thread Starter Board Replies Last Post
    TENS unit, Neurountin and lidocaine cream penybobeny Pain Management 9 11-12-2006 01:39 PM
    Lidocaine Puch via IV over 6 hours - Anyone ever heard of such a thing? mngirl Pain Management 3 04-02-2005 07:04 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 01:08 AM.





    © 2020 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!