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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index

Okay, so its been awhile since I have last visited and here I am with yet another question. Who has information on this subject? I remember seeing a post back of a young woman who was going for this procedure. What was the outcome? Good/Bad? As some you of well know that my RSD is spreading and I am now looking for other forms of treatments and opinions. My PM dr has hit rock bottom (Great for me, huh!) and no clue in which direction to go for help. So, I am trying other avenues of information.

So if you are someone who can help, please post. I will be greatful!

Thanks, Ben
hi Ben!

I remember the post but sorry I can't recall the outcome. :rolleyes: RSD brain. Did you ever see the series House, where when he got shot, & asked for Ketamine treatments?? I guess they did it and it worked for a while and he wasn't using his handful of pills X amount times per show. But at the end of the series, it was like he dreamt the whole thing anyway, because the ketamine affected his brain-- short term and long term. I'm still waiting for season 3 to come out on disc thru Netflix, and I'm really frustrated, because now that American Idol is on, he isn't even being played:mad:

I'm sorry that you're Pm is running out of options. Have you discussed removing the stim and getting a pump like Sharon has. After being around all these lovely souls here, I think that after all the treatments, oral meds, doctors, etc., that the only peace we will find will be the pump which I'm sure is $$$, but to have the oral meds bypass your liver. Sharon used to be on like 600 mg of MsCotin aday along with others. :eek: Some people look at me at go WOW 180 mg a day of morphine. I say to them at least I'm back with the living and not curled up in a ball in my bed. I wish I could offer you more positive advice. Maybe someone else can. How's Cheryl and the kids? Has anything else changed or are you still living with the outlaws, LOL I mean inlaws. Stay positive. Find humour. It's the only thing that keeps me from going insane. Aloha Skooze:D
[COLOR="DarkGreen"]Ben It's good to hear from you. I've read alot about ketermine treatment. Doesn't sound like they do alot of them. The lady I know that is going to have them done her first tratment is thursday, I'll ask her if I can give you the information. Or maybe you can go to the site and talk to her.

I am thinking about the pain pump. I don't know if you have read all the posts. But as you know my SCS has never worked correctly. Have to still hold my head a certain way or lay to have it work. And my pain is still just so out of Dr sent me to a new pain Dr.for a evaluation for a pain pump..but he thinks the SCS either needs to be fixed or he started me on fentyal patches and higher dose of loratab. And referred me to a now I wait for w/c to approve the test. Neroligist wants to put in different kind of SCS...but I would have to have a cervical laminectomy. He thinks its a betterSCS. So how is your SCS doing? Actully how are doing just in general...we miss you posting. W/c giving you anymore trouble. If I remember right you were trying fentyal...are you still on it? I am have a hard time keeping the patches on, do to the sweating. But they are helping with my pain. But just thinking on using them long term has me scared. A lady if I remember right (her Name was Marica) wrote a post that was very full of imformation regarding medication and what they are doing to our kindeys and livers. If I keep taking all this stuff both my liver and kidneys are going to rot out of my body...there just has to be something different. So after reading that...the pump looks better to me every day. Well Ben I just wrote a book...please post more often...Take Care, Dee[/COLOR]
Hey guys! Dee, please get me the info on that guy regarding the Ketermine treatments I am very interested. I do remember you having that problem with your SCS and I very sorry it isn't doing what it should. AS for mine, well, the only good thing is that it hasn't "Pooped" out on me yet! LOL It doesn't work when I lay down, but at least while standing it continues to let me keep a shoe on and walk with the help of my cane not crutches. Yeah, posting on the boards has become my least priority and I apologize for that. I'll keep on top of things. Cheryl and my daughter are doing fine, but we are still going thru the same RSD issues regarding family life and trying to adjust. Oh my ...! It has been a 15 months since my initial accident. I can't believe how fast the time has gone by doing absolutely nothing. :eek: Skooze, in answer to your question.....yes, I still live wtih the "outlaws". It is hard task on a daily basis dealing with them. I am pleasently surprised that I lasted this long. I really don't want to have my SCS played with in order to be removed, added leeds, replaced with anything else for fear that my RSD will spread further up my leg into my hip. So far since it has now affected my knee I am in agony and deal with it. My meds include 60mg Oxycotin and I really don't want the pump. I was given the chance to have it, but w/c denied and settled for the SCS. So hear I am!

I was aware the the program "House" said that the dr had RSD, but I have not watched it. Not sure how much info they have incorporated on RSD into the show. My inquiry about Ketermine infusions is that I want to see who has done it and what precentage it has helped. I have read some stories from other websites, but I want first hand experience. Cheryl is on the verge of trying anything for me if it will truly help. I on the other hand am not really sure about anything anymore. I know, I know I need to be optimistic, but hey it is hard when your brain is fried by the pill, your body hurts from not resting and life has dealt you a wrong deal. Sorry, I know I am venting. But you know what I am mean and feel. So on that note I would appreciate from Dee that guys info. You guys take care and try to have a pain free day. Ben
Ben....The lady I am talking about is having his first ketemine treatment starting Feb. 1st. So as soon as she post again I will talk with her. Are you and your Dr talking about doing ketemine treatments? I know this this man is doing the 4 hour treatment...if I remember right. He has RSD full body.

I just got approved to have a cat scan& some x-rays of my SCS to see if the new Dr. can replace it with a different SCS. I not sure about having this kind of surgery to have this new scs put is...but willing to see what going on with the old scs. I may just have them leave my old one does still help when I lay down. Will talk with you soon. Dee
Thanks Dee for the info. I will wait patiently. No I am not currently in talks with my PM for the treatments, but my wife is starting to push me to consider this as an option. I really don't know if I want to go thru with this. So much info that is needed. She is trying to get in contact with a specialist in Arkansas to see what the wait time is for a consult and see if I am in deed a candidate. Persoanlly, I really don't know how this works when you are on WC. I mean if I see him does he have an obligation to contact my WC? Also, do I end up putting my WC in jeoparady? See, questions come.

Good luck with the testing and hopefully you can come to a decision regarding your SCS. I don't know if I would take the chance on removal and reimplantation. So much to consider. I am sorry to don't mean to upset you if I did. What we have to endure with RSD! Once again, hopefully things work out well. I talk to you soon. Ben
[COLOR="Blue"]Ben...Here is Jay's post about her first ketemine treatment. I hope this will help you out. Take care, Dee[/COLOR]

Sorry I need to be brief - but I am oh so happy

Hope all of you get a chance

50mg total of ketamine

10mg fast - it was very mind altering but not scary

Then the other 40mg running at 10 per each hour

It lasted for 4+ hours

I had NO side effects

They let me rest but always made sure I could be alert

First my hands stopped burning (2 &Ĺ years of burning)

Then my hands and wrist stopped hurting - I started smiling

After a few hours the inside of my RSD leg started to feel hollow - like an empty tree trunk - it hard to describe

Then I felt like the outside of my leg was a burning thick knee sock - the kind I wore as a girl

I spoke to several people at the hospital doctors, etc. who had never seen a ketamine infusion, after my doctor asked my permission - I thought the more that know the better

Remember I suffer severe lower back pain, neck pain, etc. for 16+ years since I was hit by a car as a pedestrian - that pain went down to a 4/5

I start with my back and leg at a SOLID 9

After maybe three hours my burning sock dropped to the same 4/5 that my back was at

I could not stop smiling

I stayed less than an hour in recovery since I did so well

I am now 40 hours since the infusion - my leg and back have moved to a solid 5 but thatís okay I am still smiling

My wonderful doctor went over with me that this is not a cure and many people, most people the pain or a percentage does return which I was fully aware and am prepared to deal with

I want to remind everyone NOTHING, and I had all the treatments including the pump, has EVER decreased my leg pain before

Maybe 6 mg of Dilaudid via IV in the ER helped for a half hour of pain but I never got near a 4 or 5

I am so excited, I am sleepy but not groggy, I sit happily playing with my hands since the mobility has greatly improved.

I do not want to sleep because I want to stay awake happy, but I do fall asleep into a cozy restful sleep not the horrible drug induced pain ridden sleep I usually have

My happiness feels like a slice of heaven, may you all feel it someday soon. May we all get it and may they find a way to make it last

For those of you who know me my concussion headache did not go away but when I came home and took my normal meds my headache reduced for the very first time.

The most happiest feeling I have is that when the pain is reduced I am NOT depressed, hopeless, blue, etc. The pain monster does that to us.

I feel like an onion and several layers of pain were peeled off and I found me again - the happy me - the old me. It has done me wonders to learn that because as most of you know who live at a 9 you begin to question your sanity

Happiness to all.

And to think all this started because I was willing to do a drug study to do something of value with my useless life. I wanted to help others and I was given the greatest gift all, even if the pain returns tomorrow.

Most sincerely and thank you all for helping me get to this moment in my life, jay
Dee, Thanks so much for that information. Okay, so now that my wife has read this thread so is much more eager to get me an appt. She feels that if my pain level was split in half, then I would rest more easily and function better. So on that note I can see what direction my life will be taking me shortly. LOL

Thanks for everything.....Ben
Ben Here is an update from Jay regarding the Ketemime . I have asked Jay when the next treatment is...I think she was to have a series of treatments. I will keep you posted. Dee

fyi for all

i am at one week from the infusion - i have gone from 50% relief to 25% relief but it is still wonderful

i cannot remember feeling so well and happy

i know it is not a cure and the pain is increasing but i have learned and benefitted so much

FOLKS ketamine is cheap it is the monitoring that costs a bit

we need to pull together and demand treatment just like kidney dialysis (spelling?) every so often to keep our pain manageable

i promise to have a sit down with my doctor after a while and beg him to try and help many of you

it is inhumane for us to not have this treatment for everyone until there is a cure

Wow, that is interesting. Of course, I would have questions of my own to ask Jay regarding her treatment. Dee, my wife has been in contact with a dr out of state regarding such treatments. According to them they have had from 50% relief to 100% relief with all of their patients with no additional treatments needed after the first initial injections. We are gathering most of the information at this time to see if I can get in just for a consult. This is most promising and it just might work. Heck! Even if I had 1/3 reduction in pain it would be a miracle and a godsend. Who knows who is a candidate and not. But what I do know that as an RSD sufferer we are willing to go to the ends of the earth for relief. I believe that if it really works and I go thru it, then I will be the national spokesman! LOL But not really spokesman and laughing. I would actually cry from joy.

So on that happy note I shall await your response.
Ben ... I know you would like to talk with Jay. But I don't know if I am allowed to post the group that I belong to so you could post to Jay. I did post to Jay earlier and ask about her next treatment. And I hate to say it but I forgot what it I know it's not funny. But I think she said it was in a few weeks. And I can't log on for some reason. I know she would talk with you. Can someone tell me if I can post the support group here and how to get Ben to it. Dee
HI DEE:wave:

I have some insight to your dilema---why not post on Jay's site about the healthboards here, and have her become a member here too as well. We are not allowed to post other websites or emails, and you don't want to be banned:nono: We all could benefit from her presence here as well a win win situation you might.

Sorry you and Ben are both having problems with the SCS. I'm just so happy to be out of the wc nightmare. But it's something we have to go thru, and it will make you a stronger person when it is all said and done. Just don't sign on the dotted line until you are offered a substantial sum. Fight it till the end. I pray you both receive relief from your pain.

Ben-- Dr. House is on Tuesday nights, and to my knowledge he doe NOT have RSD. I've watched every episode and his team consists of a neuroligist. He has chronic pain from a bum knee- which they showed on one episode.:eek: It wasn't pretty. Thank God the Idol show is down to 1 hour and he is back on tv:) You should try and watch it. It will take the mind off of your pain when you see what of these patients go thru. Aloha Skooze:)
Hey Guys,
I haven't posted in quite a while, sorry. As for the ketemine Infusion, it was offered to me and W/C said no way... My AME said yes and If I still want it I can have it. He said it would make me like a wet noodle for about 6 to 12 hours then the pain should be gone for a while. How long??? No telling, could be months, weeks days or not at all... So until I am sure...No way.:eek: .. As for my SCS... It helps except... It has malfunctioned since birth. lol... It overheated everytime I have charged the battery in side me. :blob_fire My side turns red and is over 106degrees after 1 hour of charging. The body inside is 98.6 but the outside is under 90. So it is more than 106 degrees and I am cooking inside know what I mean??? I am waiting for it to be replaced. All the drugs...such a fun thing...yeah right. Don't ya just get tired of everyone calling you a legalized druggie or is it just me??? Anyway God Bless... I pray they find a cure for each and everyone...Hey Skooze, Sharon and all..:wave: . take care... Bernie
Bernie, Wow way too hot for me! I have a SCS and I don't have that kind of problem. What manufactuer do you have? Mine is Medtronics. As far as Ketamine infusion, my wife was able to speak with a dr who has had success with it and I could be seen as earlier as August for a consult. We are still reading up on case history, but if I could have 50% improvement then life would be good.

Skooze, that is interesting about "House". Also, good idea for Dee to have her friend join these boards. That would be good to learn first hand from someone who has had the treatment. Too bad my meds are affecting my braincells or I would have thought of it myself! :) LOL
[COLOR="Blue"]Hi Bernie,

It's nice to see you back here! That's something about your stim. YIKES! Hang in there.

Sharon :)[/COLOR]
Hi Bernie!:wave:

Yes it has been ions since you last posted, but I'm sure your excuse is very valid--in fact it sounds horrible. Cooking on the insisde, reminds me of something that happens when you go to too many tanning booths! :eek: I don't know but I'd push for the ketamine treatment. I asked my doc about them and no one does that work here in Maui. If I was you I'd be yanking that SCS out of me. My dr. just upped my meds this month due to my left wrist swelling the size of a golf ball. I'm still on 180 mg of MsCotin a day but she upped me to percocets 10 mg/ 325mg tylenol. I told her I was concerned about taking too much tylenol. Some one here posted how 3000 mg of tylenol aday will cause liver damage and she agreed. Plus they don't upset my tummy as much. Good to see you back. Aloha Skooze:)
Skooze, Sharon, Dee and Scruffys Dad...
Howdy yall, Aloha, whats up and etc... Scruffys Dad... the device is Medtronics also. The Medtronics rep tested it and watched the skin turn bright pink and go up from under 90 degrees to over 106 in just one hour. This can be normal says the Tech from Medtronics... Uh yeah:confused: Anyway, My doc says yeah yank it out and replace on the other side of my stomach... The last time I charged it didn't get too hot but there was pain in my stomach for a few days... So I will see what happens next... As for the Pain... Uh Yeah... my meds now are Darotten (oops) Newuronten 1800 to 2500 mgs per day... Morphine (Kadian) 60 mgs per day, Tramadol ER 400 to 600 per day, Something for my stomach (I can't remember what it is now, never had memory loss that I can remember) and Zanophlex 100 to 400 mgs, Baclophen 100 to 400 mgs ... andLunesta 3 mgs... By the way.. don't let anyone tell you Lunesta isn't addictive... I haven't had it for 4 days cuz I was out and I am going thru detox...bummer... I got more at home now so yippee I don't have to sweat it... I have a ketemine past combo that has some 6 or 7 different meds in it for my legs that swell and turn bright red and for the dry, flaking they gave me 2.5mg cortizone to put on just before the paste...As for no talk for long time... Yeah sorry, I have been out of town working... Yup yup yup working... With all this pain, drugs and no sleep... Ya gotta wonder how long I can keep it up,,, With God's dear grace is all I can say. My stomach is hot and hurts, My left shoulder feels like it is broken, my face is numb, on fire and feels weird to the touch, my back is in pain and spasems, my hips legs and feet are worse... Wait a minute these are all everyone elses problems... Gosh I love RSD, without it I would never have met you all...Sorry for the long post... Take care. don't let it get you down.. May the good Lord Bless and keep you all... Bernie:angel:
Reedim, how awful for you, but hey I am going thru basically the same thing. I have Medtronic SCS for almost a year with no problems, but let me tell you about my daily intake of candy...yuk! yuk! yuk! Lyrica 750mg daily, Cymbalta 50mg, Oxycotin 60mg daily, Topomax 100mg daily, Relpax once a day, Ultram ER 100mg daily. What more could I take? But I have to say I tried the Ketermine cream on my leg, but I was told it would burn. Yes, it did. My leg was on fire and I couldn't even run water on my leg to try to remove it. How do you stand it?

I thank you for your info.
Ben: Coadministration of Cymbalta and Ultram (tramadol) risks serotonin symdrome - a rare but serious and potentially fatal condition. Ask your pharmacist for advice regarding this combination, just to be safe.

I am on tramadol and was prescribed Cymbalta. After reading about the interactions, I did not take any Cymbalta at all but instead contacted my physician and was prescribed another medication in place of the Cymbalta.
Regards, Lil
Uhm, that is very interesting and I thank you for the information regarding the two med combos. I was taking Alavil (sp?) and the pharmacist wouldn't fill my Ultram ER do to the two combos, so I would have to say that they already knew about the interactions. But I find it funny that I am coming down with a chest cold and my dr prescribed Mucinex DM. I spoke to the pharmacy and explained the combinations of Cymbalta with the Mucinex and they felt there was no need for worry. It is so hard keepiing up with the meds and what you can and can not take! No matter how you look at it I am grateful for anyone who can show me a problem etc.

Thank you,
The creme I have has at least 6 different meds in it, not just ketemine. I believe some of the meds include... neuronten, lidocaine, ketemine, cortizone and 3 or 4 more I can't remember. The creme is compounded by a local pharmicy and sent to my home. I am supposed to put on 3 times a day...That is impossible. It makes you tired due to all the meds in it. I was waking up in the morning and seeing double, falling and dizzy for a while. I realized I was double dosing... All the meds at night plus the creme with all the same meds in it so I had to lower some doese's and now I have it dialed in. I hope you can find a creme for yourself as it really does stop the burn after about 5 to 10 minutes. Then the pain goes away and short term bliss:blob_fire ... not really but it is fun to dream. I can't wait for this to end... God is good:D ... One day a whole new body:angel: ... I hope all is well with Skooze, Dee and Sharon and all the others... God bless... May He shine His face upon you and bless all you do...Your in my prayers... Bernie <><

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