RSD and My Ketamine Treatment The Journey Goes On!
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byrd45 Mon Jan 05, 2009 9:08 pm
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From: Liz3079
Hi Kevin
I am in Illinois ,on my second attorney and he is as bad as the first. How did you find you such a good attorney.I have got to fire this one .He is not fighting for anything for me.Do you always have to drive so far for treatment.I am miserable as can be. Just got over a spell with my back and Im hoping it isnt the rsd spreading since its mostly on the left side and my rsd has went from my left wrist up my arm to my shoulder and not so sure its spreading to my left torso area. Ive had this for over 2 years now. My lawyer says nothing that can be done for me other than take medication. He chose my drs for me to go to and they dont even seem to care.So I am really really miserable with a do nothing attorney who only wants to settle.I refuse to do that.Meantime my hand is just wasting away.
Love and gentle hugs.|
Liz
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From: <NOBR>Rittlemom1</NOBR> Sent: 12/19/2006 10:29 PM
Hi, Kevin, & Liz, I will second the motion on Lubenow. He is the Dr. I was speaking to Liz about a while back. I have been seeing him for about a year and half. He is very good and speacializes in RSD. Its kinda neat to hear of someone else knowing the same doc and more importantly sharing a positive opinion, that is rare it seems around here. I sure wish you could find a way to get to him Liz, I think it would make a world of difference in your life. keep working on it . Merry Christmas to all. Kathy
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From: <NOBR>byrd45</NOBR> (Original Message) Sent: 12/18/2006 10:07 AM
Hi Everyone,
Tomorrow I go back in to have a port placed in my chest so they can do the rest of my treatments. Now I can't remember if I mentioned this before but they originally put in a hiekman catheter which they felt wouldn't be as convenient (for me for showering and would need too much maintenance to keep the site flushed and open)so we decided to take it out and the same doctor who put that in is going to place a port instead. The port is placed inside your body and stitched in place giving easy access so they can do the treatments through there. It heals up and all you feel is a tiny prick when they access it. There is much less chance of infection this way and they are much more long term and can stay in place for years if you need them too. They only have to be flushed once a month(that is when they access the port and put a little saline solution through your vein so that it remains open just like they do when you have an iv)and are basically used the way an iv would be used and they can also take blood from the port if they need that. This is such a good option for me since my veins are terrible and they just have the most terrible time finding anything anymore in my arms. They sweat through it just to get an iv in each time I go in the O.R. that is how bad it is. I hate it because I usually get stuck and bruised so many times. Last time I went off on the one anesthesia guy because he was frustrated looking and looking so he started smacking my arm hoping to bring somthing to the surface. Oh he brought something to the surface alright!!! A healthy dose of anger from me that hurt so bad!!!! I have RSD full body and my arms are where it started so they are the worst parts RSD wise. I didn't know whether to throw up on him or kill him! Anyhow I screamed at him at the top of my lungs"Hey pal RSD HERE You MIND!!!" Scared him too he backed away for a minute. Then I said as I was rubbing my arm ,"Uh,I told you I have full body RSD do you understand what that is? By this time there are two other people with us the other anesthesiologist and the nurse who are both looking at him like he is the biggest idiot who ever lived. Anyway he looked at the other anesthesiologist and he shrugs and tells him man you are on your own she told you she has RSD the nurse gives him the dirtiest look she can muster and says to me what happened. Then she tells him like I did what are you crazy you can't treat an RSD patient like that there nerves are very sensitive and I hope you apologized which of course he had and did about five more times whenever he was anywhere near me after that. Bonehead lol Hey though that's two out of three medical professionals I would say things are improving some. Keep in mind this is a teaching hospital they are usually better educated most of the time but there is hope the word is getting out there more and more.Well anyhow tomorrow is the operation to have the port placed and they will keep me for awhile but as far as I know they should let me go home later that afternoon. Then on December 27 and December 28 I will be going back for my first series of boosters. At this point the treatment is still helping alot but is showing some signs of wearing off. I'm staying positive and feel blessed for the pain relief I have and am definitely way improved from where I was when I went into the hospital before my treatment. Some of the pins and needles,stiffness, and pain have come back in my leg, arms, and face.The burning isn't too bad though so all in all I feel the treatment is still holding on pretty well. I notice problems after I ride in the car so I am keeping my time in the car to a minimum but we all know there are times when we just don't have a choice.Well that is where things are at for now and I will post again after the surgery so you all know that things went okay. If I am away for a few days it is just because you are sore afterwards so if I can I will post but if I am not able to it just means I needed a few days to heal so don't worry okay.
Love,
Robyn
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From: <NOBR>awife8281999</NOBR> Sent: 12/18/2006 3:40 PM
wow robyn... thank you for sharing all this.. i am glad you are still feeling some relief .. my heart goes out to you and i think of you everyday. hugs, tammy
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From: <NOBR>EMY2628</NOBR> Sent: 12/19/2006 12:26 AM
HI ROBYN,
I WISH YOU THE BEST OF LUCK WITH HAVING THE PORT PUT IN TOMORROW AND I AM PRAYING FOR YOU EVERY DAY THAT THESE LITTLE "BOOSTER" TREATMENTS WILL KEEP YOUR PAIN AT A LEVEL WHERE YOU CAN MANAGE TO LIVE WITH IT! WHAT A BLESSING TO HAVE THE PAIN LEVELS ALMOST CUT IN HALF. HOPEFULLY WITH EACH NEW "BOOSTER" THINGS WILL CONTINUE TO GET BETTER AND BETTER. AS I SAID YOU WILL REMAIN IN MY THOUGHTS AND PRAYERS, PLEASE TAKE CARE OF YOURSELF AND GOD BLESS YOU
BEST WISHES FOR A VERY MERRY CHRISTMAS AND A HAPPY AND HEALTHLY NEW YEAR TOO!
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From: byrd45 Sent: 1/4/2007 9:21 PM
Hi everyone,
The operation went well and I am happy to have gotten home yesterday evening. I will check in again when I am feeling a little better.Until then I hope you don't mind keeping each other company. Take care and talk to you all soon!
Love,
Robyn
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From: <NOBR>awife8281999</NOBR> Sent: 12/20/2006 3:02 PM
glad you are home all all went well.. merry xmas and hope all goes good .. hugs to all ... tammy
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From: <NOBR>DocSuess</NOBR> Sent: 12/20/2006 5:54 PM
I glad that everything went well!! Hope that you have a great Xmas and New Year.
Lou
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From: <NOBR>EMY2628</NOBR> Sent: 12/21/2006 9:40 AM
HI ROBYN,
I AM SO GLAD THAT ALL WENT WELL, AND NOW YOU CAN JUST RECOVER, RELAX AND ENJOY CHRISTMAS WITH YOUR FAMILY.
TAKE CARE AND GOD BLESS, TALK TO YOU SOON.
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From: <NOBR>byrd45</NOBR> (Original Message) Sent: 12/29/2006 9:17 PM
Hi Everyone,
I had my two days of out patient Ketamine treatments and am now recovering at home. There is some withdrawal but otherwise doing pretty good. I have so much to tell you all but it will have to wait until tomorrow or the next day sorry but I answered some posts and now I am wiped out. Good bye for now but I will be back to finish answering the rest of you I may have missed and to fill you all in. I hope everyone is enjoying preparing for New Years and has the happiest and best one yet!
Love,
Robyn
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From: <NOBR>Liz3079</NOBR> Sent: 12/29/2006 10:02 PM
Hi Robyn
I was wondering what happened to you.I wondered if maybe you wasnt having one of your treatments. I imagine it worries your kids about you.I will be looking forward to hearing from you and how things are going.Just take it easy.
Love and gentle hugs.
Liz
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From: <NOBR>awife8281999</NOBR> Sent: 12/31/2006 11:19 AM
ty for the update and please take care... hugs,tammy
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From: <NOBR>EMY2628</NOBR> Sent: 12/31/2006 3:52 PM
HI ROBYN,
GLAD TO HEAR YOU MADE IT THROUGH YOUR FIRST ROUND OF OUTPATIENT BOASTERS DOSES ALRIGHT. I HOPE YOU BOUNCE BACK QUICKLY AND HAVE A VERY HAPPY AND HEALTHY NEW YEAR. TAKE CARE AND GOD BLESS
EILEEN
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From: byrd45 Sent: 9/22/2007 3:14 PM
Hi Everyone,
As alot of you already know this was my last Ketamine treatment.I stopped posting here because that was where my journey with Ketamine treatments have ended for now at least. I developed a blood clot that was very serious and almost took my life during the middle of January of 2007. It has taken me until now, September 2007, to be able to add onto this thread. I was so ill for so many months after being released from the hospital that it scares me to even think back to that time.I talked in depth about what happened to me in my RSD story if you want to read more about it. How it stands for now is I cannot ever have another port or hiekman implanted it is to risky. My left arm is not ever allowed to be used for any type of iv access or blood withdrawal or even to take my blood pressure from. My right arm has RSD so severely that they have been avoiding using that side for any iv lines,hiekmans etc.afraid of further damage. This puts me in between a rock and a hard place when it come to the Ketamine treatment since it has to be infused through an iv.So for now I am in no mans land and leaving it there unless I decide to take the risk of letting them use my right arm. If I did this I am also high risk to devolop further blood clots but since they know about that issue they can medicate me beforehand. As always there are never any guarantees with that. Well this is where it stands for now I sit and ponder what I want and for now I want them to leave it be. I figure it is the best way for me and my family.
Love,
Robyn
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From: byrd45 Sent: 5/29/2008 8:30 PM
Hi Everyone,
I am currently back on the Ketamine list and have been on it waiting about six months now. I'm still a little unsure what I want but I figure when they finally call me I will know what to do then. There are no assurances that the surgeon will be willing to put a line in my upper right arm but that is the only relatively safe place left as long as they infuse me with anti-clotting drugs first. He might be too scared to work on me at this point and we won't know that until they call and we try to scedule with him.If the RSD hadn't spread so far as it has(full body and into my bowel) I wouldn't even consider going through with this. I just want to be able to have a life that doesn't include being in my bed most of the day. That is where things are now I will fill you all in when there are other changes.
Love,
Robyn
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From: Liz3079
Hi Kevin
I am in Illinois ,on my second attorney and he is as bad as the first. How did you find you such a good attorney.I have got to fire this one .He is not fighting for anything for me.Do you always have to drive so far for treatment.I am miserable as can be. Just got over a spell with my back and Im hoping it isnt the rsd spreading since its mostly on the left side and my rsd has went from my left wrist up my arm to my shoulder and not so sure its spreading to my left torso area. Ive had this for over 2 years now. My lawyer says nothing that can be done for me other than take medication. He chose my drs for me to go to and they dont even seem to care.So I am really really miserable with a do nothing attorney who only wants to settle.I refuse to do that.Meantime my hand is just wasting away.
Love and gentle hugs.|
Liz
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From: <NOBR>Rittlemom1</NOBR> Sent: 12/19/2006 10:29 PM
Hi, Kevin, & Liz, I will second the motion on Lubenow. He is the Dr. I was speaking to Liz about a while back. I have been seeing him for about a year and half. He is very good and speacializes in RSD. Its kinda neat to hear of someone else knowing the same doc and more importantly sharing a positive opinion, that is rare it seems around here. I sure wish you could find a way to get to him Liz, I think it would make a world of difference in your life. keep working on it . Merry Christmas to all. Kathy
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From: <NOBR>byrd45</NOBR> (Original Message) Sent: 12/18/2006 10:07 AM
Hi Everyone,
Tomorrow I go back in to have a port placed in my chest so they can do the rest of my treatments. Now I can't remember if I mentioned this before but they originally put in a hiekman catheter which they felt wouldn't be as convenient (for me for showering and would need too much maintenance to keep the site flushed and open)so we decided to take it out and the same doctor who put that in is going to place a port instead. The port is placed inside your body and stitched in place giving easy access so they can do the treatments through there. It heals up and all you feel is a tiny prick when they access it. There is much less chance of infection this way and they are much more long term and can stay in place for years if you need them too. They only have to be flushed once a month(that is when they access the port and put a little saline solution through your vein so that it remains open just like they do when you have an iv)and are basically used the way an iv would be used and they can also take blood from the port if they need that. This is such a good option for me since my veins are terrible and they just have the most terrible time finding anything anymore in my arms. They sweat through it just to get an iv in each time I go in the O.R. that is how bad it is. I hate it because I usually get stuck and bruised so many times. Last time I went off on the one anesthesia guy because he was frustrated looking and looking so he started smacking my arm hoping to bring somthing to the surface. Oh he brought something to the surface alright!!! A healthy dose of anger from me that hurt so bad!!!! I have RSD full body and my arms are where it started so they are the worst parts RSD wise. I didn't know whether to throw up on him or kill him! Anyhow I screamed at him at the top of my lungs"Hey pal RSD HERE You MIND!!!" Scared him too he backed away for a minute. Then I said as I was rubbing my arm ,"Uh,I told you I have full body RSD do you understand what that is? By this time there are two other people with us the other anesthesiologist and the nurse who are both looking at him like he is the biggest idiot who ever lived. Anyway he looked at the other anesthesiologist and he shrugs and tells him man you are on your own she told you she has RSD the nurse gives him the dirtiest look she can muster and says to me what happened. Then she tells him like I did what are you crazy you can't treat an RSD patient like that there nerves are very sensitive and I hope you apologized which of course he had and did about five more times whenever he was anywhere near me after that. Bonehead lol Hey though that's two out of three medical professionals I would say things are improving some. Keep in mind this is a teaching hospital they are usually better educated most of the time but there is hope the word is getting out there more and more.Well anyhow tomorrow is the operation to have the port placed and they will keep me for awhile but as far as I know they should let me go home later that afternoon. Then on December 27 and December 28 I will be going back for my first series of boosters. At this point the treatment is still helping alot but is showing some signs of wearing off. I'm staying positive and feel blessed for the pain relief I have and am definitely way improved from where I was when I went into the hospital before my treatment. Some of the pins and needles,stiffness, and pain have come back in my leg, arms, and face.The burning isn't too bad though so all in all I feel the treatment is still holding on pretty well. I notice problems after I ride in the car so I am keeping my time in the car to a minimum but we all know there are times when we just don't have a choice.Well that is where things are at for now and I will post again after the surgery so you all know that things went okay. If I am away for a few days it is just because you are sore afterwards so if I can I will post but if I am not able to it just means I needed a few days to heal so don't worry okay.
Love,
Robyn
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From: <NOBR>awife8281999</NOBR> Sent: 12/18/2006 3:40 PM
wow robyn... thank you for sharing all this.. i am glad you are still feeling some relief .. my heart goes out to you and i think of you everyday. hugs, tammy
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From: <NOBR>EMY2628</NOBR> Sent: 12/19/2006 12:26 AM
HI ROBYN,
I WISH YOU THE BEST OF LUCK WITH HAVING THE PORT PUT IN TOMORROW AND I AM PRAYING FOR YOU EVERY DAY THAT THESE LITTLE "BOOSTER" TREATMENTS WILL KEEP YOUR PAIN AT A LEVEL WHERE YOU CAN MANAGE TO LIVE WITH IT! WHAT A BLESSING TO HAVE THE PAIN LEVELS ALMOST CUT IN HALF. HOPEFULLY WITH EACH NEW "BOOSTER" THINGS WILL CONTINUE TO GET BETTER AND BETTER. AS I SAID YOU WILL REMAIN IN MY THOUGHTS AND PRAYERS, PLEASE TAKE CARE OF YOURSELF AND GOD BLESS YOU
BEST WISHES FOR A VERY MERRY CHRISTMAS AND A HAPPY AND HEALTHLY NEW YEAR TOO!
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From: byrd45 Sent: 1/4/2007 9:21 PM
Hi everyone,
The operation went well and I am happy to have gotten home yesterday evening. I will check in again when I am feeling a little better.Until then I hope you don't mind keeping each other company. Take care and talk to you all soon!
Love,
Robyn
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From: <NOBR>awife8281999</NOBR> Sent: 12/20/2006 3:02 PM
glad you are home all all went well.. merry xmas and hope all goes good .. hugs to all ... tammy
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From: <NOBR>DocSuess</NOBR> Sent: 12/20/2006 5:54 PM
I glad that everything went well!! Hope that you have a great Xmas and New Year.
Lou
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From: <NOBR>EMY2628</NOBR> Sent: 12/21/2006 9:40 AM
HI ROBYN,
I AM SO GLAD THAT ALL WENT WELL, AND NOW YOU CAN JUST RECOVER, RELAX AND ENJOY CHRISTMAS WITH YOUR FAMILY.
TAKE CARE AND GOD BLESS, TALK TO YOU SOON.
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From: <NOBR>byrd45</NOBR> (Original Message) Sent: 12/29/2006 9:17 PM
Hi Everyone,
I had my two days of out patient Ketamine treatments and am now recovering at home. There is some withdrawal but otherwise doing pretty good. I have so much to tell you all but it will have to wait until tomorrow or the next day sorry but I answered some posts and now I am wiped out. Good bye for now but I will be back to finish answering the rest of you I may have missed and to fill you all in. I hope everyone is enjoying preparing for New Years and has the happiest and best one yet!
Love,
Robyn
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From: <NOBR>Liz3079</NOBR> Sent: 12/29/2006 10:02 PM
Hi Robyn
I was wondering what happened to you.I wondered if maybe you wasnt having one of your treatments. I imagine it worries your kids about you.I will be looking forward to hearing from you and how things are going.Just take it easy.
Love and gentle hugs.
Liz
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From: <NOBR>awife8281999</NOBR> Sent: 12/31/2006 11:19 AM
ty for the update and please take care... hugs,tammy
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From: <NOBR>EMY2628</NOBR> Sent: 12/31/2006 3:52 PM
HI ROBYN,
GLAD TO HEAR YOU MADE IT THROUGH YOUR FIRST ROUND OF OUTPATIENT BOASTERS DOSES ALRIGHT. I HOPE YOU BOUNCE BACK QUICKLY AND HAVE A VERY HAPPY AND HEALTHY NEW YEAR. TAKE CARE AND GOD BLESS
EILEEN
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From: byrd45 Sent: 9/22/2007 3:14 PM
Hi Everyone,
As alot of you already know this was my last Ketamine treatment.I stopped posting here because that was where my journey with Ketamine treatments have ended for now at least. I developed a blood clot that was very serious and almost took my life during the middle of January of 2007. It has taken me until now, September 2007, to be able to add onto this thread. I was so ill for so many months after being released from the hospital that it scares me to even think back to that time.I talked in depth about what happened to me in my RSD story if you want to read more about it. How it stands for now is I cannot ever have another port or hiekman implanted it is to risky. My left arm is not ever allowed to be used for any type of iv access or blood withdrawal or even to take my blood pressure from. My right arm has RSD so severely that they have been avoiding using that side for any iv lines,hiekmans etc.afraid of further damage. This puts me in between a rock and a hard place when it come to the Ketamine treatment since it has to be infused through an iv.So for now I am in no mans land and leaving it there unless I decide to take the risk of letting them use my right arm. If I did this I am also high risk to devolop further blood clots but since they know about that issue they can medicate me beforehand. As always there are never any guarantees with that. Well this is where it stands for now I sit and ponder what I want and for now I want them to leave it be. I figure it is the best way for me and my family.
Love,
Robyn
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From: byrd45 Sent: 5/29/2008 8:30 PM
Hi Everyone,
I am currently back on the Ketamine list and have been on it waiting about six months now. I'm still a little unsure what I want but I figure when they finally call me I will know what to do then. There are no assurances that the surgeon will be willing to put a line in my upper right arm but that is the only relatively safe place left as long as they infuse me with anti-clotting drugs first. He might be too scared to work on me at this point and we won't know that until they call and we try to scedule with him.If the RSD hadn't spread so far as it has(full body and into my bowel) I wouldn't even consider going through with this. I just want to be able to have a life that doesn't include being in my bed most of the day. That is where things are now I will fill you all in when there are other changes.
Love,
Robyn
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continued.......
byrd45 Mon Jan 05, 2009 9:08 pm
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From: <NOBR>glendapullum</NOBR> Sent: 12/5/2006 9:06 AM
Robyn
So glad your back home with your family and glad to hear you got some relief . We really missed you around here and I know in my heart everyone was keeping you in their prayers .Well now just don't over do and loose what you've gained .Let those boys take care of you for a change LOL
hugs
glenda
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From: <NOBR>byrd45</NOBR> Sent: 12/7/2006 9:37 AM
Hi Everybody,
Thank you all so much! I appreciate everything you all posted you are all so wonderful and I feel so lucky to know you all.I'm going to start a new post for my post about my treatment. Talk to you all soon and enjoy your day hopefully filled with lowered pain levels.
Love,
Robyn
From: <NOBR>byrd45</NOBR> (Original Message) Sent: 12/7/2006 10:05 AM
Hi Everyone,
I wanted to continue where I left off the other day and tell you all in more detail how my treatment went. I went into the hospital Monday Morning they took me to the O.R. and inserted a hiekman in my chest which is sort of like an iv but they do this type because my veins are not accessable any more in my arms. Once placed they can just hook up the iv directly to the hiekman instead of looking for a new vein each time and it stays in place during the five day stay for my tretment.The heikman is stitched into a main artery in your chest which is considered a minor operation and that is why they do it in the O.R. They give you anesthesia and you don't feel anything during placement. Afterwards you go to recovery and they give you something for the pain at the site of the hiekman if you feel you need it. They keep you in recovery for a little while and monitor you and also do a chest x-ray to check for placement of the heikman. If everything looks good then they send you up to Neuro I. C. U. This is where you spend your five days in the hospital. They hook you up to a heart monitor and continue to monitor your heart throughout your stay. They also monitor your temperature,pulse,blood pressure and blood as well. First they give you iv fluids and once the blood tests come back they start your treatment. They start out with lower doses of Ketamine and every two hours the dose of Ketamine is raised until they reach a maximum allowed dose. You are continuously infused whether through a hiekman or iv 24/5. At first I didn't notice much of a effect from the Ketamine other than a small lowering of my pain levels.As the levels were raised I noticed my pain lowered even more and most people do experience anxiety and hallucinations due to the Ketamine. I started hallucinating on a minor level the first night and as the meds increased they increased. Some were a little scary but most weren't for me some were even silly. I just kept reminding myself it was the meds doing this it wasn't real and that helped. Plus they give you a medication for these symptoms but you have to ask. If you get this treatment at some time don't hesitate to ask for the medicine which calms the anxiety and hallucinations. It really helps and it's only side effect is it makes you tired.I am going to stop here and will continue this post again as soon as I can.
Love,
Robyn
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From: <NOBR>EMY2628</NOBR> Sent: 12/10/2006 12:15 AM
ROBYN,
I AM SO GLAD TO HEAR ABOUT THIS PROCEDURE AS I AM HOPING IT WILL BE THE NEXT ONE FOR ME, I THINK I WILL FIND OUT ON MONDAY, WHICH WAITING LIST I AM GOING ON NEXT!!
I AM ALSO THRILLED FOR YOU, THAT YOU GOT SOME GOOD RESULTS FROM IT.
ARE YOU STILL FEELING RELEIF FROM YOUR PAIN AT LEAST TO SOME DEGREE? WILL YOU HAVE TO HAVE THIS PROCEDURE REPEATED OR IS IT A ONE TIME THING?
I'M SORRY FOR ALL THE QUESTIONS, IT JUST SOUNDS SO PROMISING AND I AM SO HAPPY FOR YOU, AND OF COURSE CURIOUS AS TO HOW THIS MAY HELP A LOT OF US SOMEDAY!
HOPE TO TALK WITH YOU SOON, TAKE CARE AND GOD BLESS YOU
EILEEN
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From: byrd45 Sent: 1/3/2007 11:14 AM
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From: <NOBR>rsdkimba29</NOBR> Sent: 12/11/2006 9:06 AM
"ALWAYS REMEMBER, NEVER FORGET..., SEPT., 11TH, 2001."
Hello, I too am glad to hear that your are okay... I just have one question? Was this Ketamine treatment the 4 day inpatient followed by the out patient treatment, or was this the Germany or Florida study. When you are up to it would you please fill me in...?
Respectfully,
Kim Deissroth A.k.a. rsdkimba29
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From: <NOBR>byrd45</NOBR> Sent: 12/15/2006 1:54 PM
Hi Eileen,
I am still feeling alot of relief! It was so worth having the treatment.What they do is they have you come in for treatments that follow up the five day stay in the hospital.I am going to continue where I left off so look for the next excerpt of My Ketamine Treatment for more information okay.I am really glad that I was able to finally have a chance to try this treatment. I have been on the list waiting for treatment for about three years because worker's comp was refusing payment.Alot of the members who have been around for awhile know but alot don't too. I had to fight in court to be able to get the treatments I needed.It is ridiculous what they put people through just so they don't have to pay because someone was truly hurt.They hear RSD and want to run because they know how much care that can mean. What they fail to realise is by treating people sooner they could actually help them instead of allowing the disease to have the time to progress and spread.
Love,
Robyn
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From: <NOBR>byrd45</NOBR> Sent: 12/15/2006 2:00 PM
Hi Kim,
How have you been? Really good to see you! It was an inpatient stay in neuro intensive care for five days you are infused with Ketamine the whole time and the amount is increased every two hours until you reach the maximum allowed dose. Then they maintain you on that as long as you do okay for the rest of your stay. Followed by outpatient followup look in "My Ketamine treatment" post and I will go into more details.Take care and talk to you soon!
Love,
Robyn
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Recommend Delete Message 1 of 6 in Discussion
From: <NOBR>byrd45</NOBR> (Original Message) Sent: 12/15/2006 2:28 PM
Hi Everyone,
I wanted to check in with all of you and continue where I left off last time......Well now the hospital trip has ended(I do mean trip to outer space lol)sorry couldn't resist.Anyhow I felt wiped out like a dish rag but a very happy dish rag if one could smile ear to ear that was me.The first thing I noticed was the air outside felt good!It's really the little things sometimes isn't it. Be very kind to yourself when you get home. Even if you feel like going out and conquering the world don't rest and recover. Resting and staying warm are big very important. Also don't do anything that would normally aggravate your RSD. It's important so that the nerves have the chance to rest.The more they rest the better things go. This is just at first like the first week or so. Don't do anything that causes pain. Otherwise you can do whatever you want you will know your own body but nothing that is to risky because you bump or bang yourself and it will ruin the treatment. I know what a bunch of rules right! It's worth it believe me when I say that it isn't as bad as it may sound. I took a shower the other day and guess what?! I enjoyed it!!! The first time in five years it hasn't hurt. Instead of rushing to get out I stayed in and enjoyed the experience.I wish it was forever but I am still thankful for the short term gift.I am interested to see if the other treatment have a build up effect. I have heard that can happen sometimes and well I refuse to be anything but hopeful.After you have had your in patient stay they schedule you to come back in a few weeks later to start your booster infusions. You come back again two weeks later, then one month later, then three months later, and 3 months later again, and after that you call if you flare up and have a problem as needed.My hands are giving up on me so have to stop here for now.
Love,
Robyn
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From: <NOBR>kregerpugs</NOBR> Sent: 12/16/2006 2:44 AM
Robyn -
I am so very happy for you and my continued prayers go out to you. I had another of my monthly pump refills yesterday and brought up the Ketamine treatment to my doctor. He wants me to continue with the Prialt to its fullest extent and if that fails, he would go ahead with the Ketamine. I really hope this pump continues to work. It seems to get a little better each time. I still have bad days and very bad days. The worst thing so far have been the side effects. You have nausea almost immediately. That usually subsides by the next day. That is when the hallucinations kick in. The higher the dose seems to bring out worse ones. If they get too strong, I have to get my Prialt adjusted right away. This is usually next day because I have to drive 4 1/2 hours one way to Cleveland.
Anyhow, just wanted to let everyone know that I am doing better as well. My cae was finally turned over to attorneys to fight that battle for me. So far So good.
Continued Prayers - Kevin
p.s. Robyn, I don't mean to sound odd, but am I the only guy on here. My wife will come down and ask me while typing a message, "How are the girls doing?"
Just Curious
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Recommend Delete Message 3 of 6 in Discussion
From: <NOBR>byrd45</NOBR> Sent: 12/16/2006 4:11 PM
Hi Kevin,
Thanks! I am so glad to hear that things are going well with the prialt! That is wonderful news and I am so happy for you too. It sounds like even though it has some side effects at first,that the benefits outweigh the problems it causes. I hope things continue to go well, but it is nice to know that your doctor has a back up plan just in case the prialt stops helping. Hopefully things will continue to go just fine but it is nice to know that for your peace of mind.You don't sound odd asking about the other guys, but I have to laugh because almost every guy on here asks me the same question at one time or another lol.Us girls far out number the guys that is for sure. Probably because the disease happens more to woman for some strange reason. That's not to say there aren't any guyswith RSD or members here. They are here... right guys! There are about a dozen or so I think guessing off the top of my head although it might be a little more than that, but not less than than that. How's this any of you guys that read this and feel like posting and saying hi please take a minute and do that if you don't mind.This way you know that you are each out there. I think that would be a great idea not weird at all! Don't be shy now lol say hi okayYour wife sounds really supportive Kevin that's really nice. That's how my hubby is and I know how much it helps to have your spouse be understanding. After all it is hard for them too and for the other family members too.I give them alot of credit so many turn away when the person finds out they have RSD.Anyway I will keep you in my prayers that things continue going well for you and I hope you and your family have a very happy holiday and an even better New Year!
Love,
Robyn
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Recommend Delete Message 4 of 6 in Discussion
From: <NOBR>Liz3079</NOBR> Sent: 12/17/2006 10:28 AM
Hi Kevin
I am in Illinois ,on my second attorney and he is as bad as the first. How did you find you such a good attorney.I have got to fire this one .He is not fighting for anything for me.Do you always have to drive so far for treatment.I am miserable as can be. Just got over a spell with my back and Im hoping it isnt the rsd spreading since its mostly on the left side and my rsd has went from my left wrist up my arm to my shoulder and not so sure its spreading to my left torso area. Ive had this for over 2 years now. My lawyer says nothing that can be done for me other than take medication. He chose my drs for me to go to and they dont even seem to care.So I am really really miserable with a do nothing attorney who only wants to settle.I refuse to do that.Meantime my hand is just wasting away.
Love and gentle hugs.|
Liz
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From: byrd45 Sent: 1/3/2007 11:20 AM
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From: <NOBR>kregerpugs</NOBR> Sent: 12/18/2006 7:45 AM
Good Morning Liz -
The attorney I am working with is in Illinois. His name is Peter Polansky. The other attorney, who people say is just as good is Dan Capron. They are both near Chicago. My situation is kind of difficult. I hurt myself in Illinois, my company is based out of California, WC is in Illinois, I live in Indiana, and the best care I could find is in Ohio. Whatever I have to do, I am willing just to find SOME relief My RSD started in my left leg. It has since spread to both legs, both arms, most of my torso, and it seems to be spreading into my head and face (my mouth hurts all the time). If you are interested I know a great Doctor in Chicago. His name is Timothy Lubenow. He studied under my current doctor and is very familiar with RSD and its treatments.
Sorry if it seems I am rambling. I hope you have a great low pain day.
Kevin
----- Original Message -----
From: RSD Outreach
To: RSD Outreach
Sent: Sunday, December 17, 2006 10:28 AM
Subject: Re: My Ketamine Treatment(the journey goes on)
New Message on RSD Outreach
My Ketamine Treatment(the journey goes on)
Recommend Delete Message 8 of 9 in Discussion
From: <NOBR>glendapullum</NOBR> Sent: 12/5/2006 9:06 AM
Robyn
So glad your back home with your family and glad to hear you got some relief . We really missed you around here and I know in my heart everyone was keeping you in their prayers .Well now just don't over do and loose what you've gained .Let those boys take care of you for a change LOL
hugs
glenda
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Recommend Delete Message 9 of 9 in Discussion
From: <NOBR>byrd45</NOBR> Sent: 12/7/2006 9:37 AM
Hi Everybody,
Thank you all so much! I appreciate everything you all posted you are all so wonderful and I feel so lucky to know you all.I'm going to start a new post for my post about my treatment. Talk to you all soon and enjoy your day hopefully filled with lowered pain levels.
Love,
Robyn
From: <NOBR>byrd45</NOBR> (Original Message) Sent: 12/7/2006 10:05 AM
Hi Everyone,
I wanted to continue where I left off the other day and tell you all in more detail how my treatment went. I went into the hospital Monday Morning they took me to the O.R. and inserted a hiekman in my chest which is sort of like an iv but they do this type because my veins are not accessable any more in my arms. Once placed they can just hook up the iv directly to the hiekman instead of looking for a new vein each time and it stays in place during the five day stay for my tretment.The heikman is stitched into a main artery in your chest which is considered a minor operation and that is why they do it in the O.R. They give you anesthesia and you don't feel anything during placement. Afterwards you go to recovery and they give you something for the pain at the site of the hiekman if you feel you need it. They keep you in recovery for a little while and monitor you and also do a chest x-ray to check for placement of the heikman. If everything looks good then they send you up to Neuro I. C. U. This is where you spend your five days in the hospital. They hook you up to a heart monitor and continue to monitor your heart throughout your stay. They also monitor your temperature,pulse,blood pressure and blood as well. First they give you iv fluids and once the blood tests come back they start your treatment. They start out with lower doses of Ketamine and every two hours the dose of Ketamine is raised until they reach a maximum allowed dose. You are continuously infused whether through a hiekman or iv 24/5. At first I didn't notice much of a effect from the Ketamine other than a small lowering of my pain levels.As the levels were raised I noticed my pain lowered even more and most people do experience anxiety and hallucinations due to the Ketamine. I started hallucinating on a minor level the first night and as the meds increased they increased. Some were a little scary but most weren't for me some were even silly. I just kept reminding myself it was the meds doing this it wasn't real and that helped. Plus they give you a medication for these symptoms but you have to ask. If you get this treatment at some time don't hesitate to ask for the medicine which calms the anxiety and hallucinations. It really helps and it's only side effect is it makes you tired.I am going to stop here and will continue this post again as soon as I can.
Love,
Robyn
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From: <NOBR>EMY2628</NOBR> Sent: 12/10/2006 12:15 AM
ROBYN,
I AM SO GLAD TO HEAR ABOUT THIS PROCEDURE AS I AM HOPING IT WILL BE THE NEXT ONE FOR ME, I THINK I WILL FIND OUT ON MONDAY, WHICH WAITING LIST I AM GOING ON NEXT!!
I AM ALSO THRILLED FOR YOU, THAT YOU GOT SOME GOOD RESULTS FROM IT.
ARE YOU STILL FEELING RELEIF FROM YOUR PAIN AT LEAST TO SOME DEGREE? WILL YOU HAVE TO HAVE THIS PROCEDURE REPEATED OR IS IT A ONE TIME THING?
I'M SORRY FOR ALL THE QUESTIONS, IT JUST SOUNDS SO PROMISING AND I AM SO HAPPY FOR YOU, AND OF COURSE CURIOUS AS TO HOW THIS MAY HELP A LOT OF US SOMEDAY!
HOPE TO TALK WITH YOU SOON, TAKE CARE AND GOD BLESS YOU
EILEEN
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From: byrd45 Sent: 1/3/2007 11:14 AM
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From: <NOBR>rsdkimba29</NOBR> Sent: 12/11/2006 9:06 AM
"ALWAYS REMEMBER, NEVER FORGET..., SEPT., 11TH, 2001."
Hello, I too am glad to hear that your are okay... I just have one question? Was this Ketamine treatment the 4 day inpatient followed by the out patient treatment, or was this the Germany or Florida study. When you are up to it would you please fill me in...?
Respectfully,
Kim Deissroth A.k.a. rsdkimba29
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Recommend Delete Message 4 of 5 in Discussion
From: <NOBR>byrd45</NOBR> Sent: 12/15/2006 1:54 PM
Hi Eileen,
I am still feeling alot of relief! It was so worth having the treatment.What they do is they have you come in for treatments that follow up the five day stay in the hospital.I am going to continue where I left off so look for the next excerpt of My Ketamine Treatment for more information okay.I am really glad that I was able to finally have a chance to try this treatment. I have been on the list waiting for treatment for about three years because worker's comp was refusing payment.Alot of the members who have been around for awhile know but alot don't too. I had to fight in court to be able to get the treatments I needed.It is ridiculous what they put people through just so they don't have to pay because someone was truly hurt.They hear RSD and want to run because they know how much care that can mean. What they fail to realise is by treating people sooner they could actually help them instead of allowing the disease to have the time to progress and spread.
Love,
Robyn
Reply
Recommend Delete Message 5 of 5 in Discussion
From: <NOBR>byrd45</NOBR> Sent: 12/15/2006 2:00 PM
Hi Kim,
How have you been? Really good to see you! It was an inpatient stay in neuro intensive care for five days you are infused with Ketamine the whole time and the amount is increased every two hours until you reach the maximum allowed dose. Then they maintain you on that as long as you do okay for the rest of your stay. Followed by outpatient followup look in "My Ketamine treatment" post and I will go into more details.Take care and talk to you soon!
Love,
Robyn
Reply
Recommend Delete Message 1 of 6 in Discussion
From: <NOBR>byrd45</NOBR> (Original Message) Sent: 12/15/2006 2:28 PM
Hi Everyone,
I wanted to check in with all of you and continue where I left off last time......Well now the hospital trip has ended(I do mean trip to outer space lol)sorry couldn't resist.Anyhow I felt wiped out like a dish rag but a very happy dish rag if one could smile ear to ear that was me.The first thing I noticed was the air outside felt good!It's really the little things sometimes isn't it. Be very kind to yourself when you get home. Even if you feel like going out and conquering the world don't rest and recover. Resting and staying warm are big very important. Also don't do anything that would normally aggravate your RSD. It's important so that the nerves have the chance to rest.The more they rest the better things go. This is just at first like the first week or so. Don't do anything that causes pain. Otherwise you can do whatever you want you will know your own body but nothing that is to risky because you bump or bang yourself and it will ruin the treatment. I know what a bunch of rules right! It's worth it believe me when I say that it isn't as bad as it may sound. I took a shower the other day and guess what?! I enjoyed it!!! The first time in five years it hasn't hurt. Instead of rushing to get out I stayed in and enjoyed the experience.I wish it was forever but I am still thankful for the short term gift.I am interested to see if the other treatment have a build up effect. I have heard that can happen sometimes and well I refuse to be anything but hopeful.After you have had your in patient stay they schedule you to come back in a few weeks later to start your booster infusions. You come back again two weeks later, then one month later, then three months later, and 3 months later again, and after that you call if you flare up and have a problem as needed.My hands are giving up on me so have to stop here for now.
Love,
Robyn
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From: <NOBR>kregerpugs</NOBR> Sent: 12/16/2006 2:44 AM
Robyn -
I am so very happy for you and my continued prayers go out to you. I had another of my monthly pump refills yesterday and brought up the Ketamine treatment to my doctor. He wants me to continue with the Prialt to its fullest extent and if that fails, he would go ahead with the Ketamine. I really hope this pump continues to work. It seems to get a little better each time. I still have bad days and very bad days. The worst thing so far have been the side effects. You have nausea almost immediately. That usually subsides by the next day. That is when the hallucinations kick in. The higher the dose seems to bring out worse ones. If they get too strong, I have to get my Prialt adjusted right away. This is usually next day because I have to drive 4 1/2 hours one way to Cleveland.
Anyhow, just wanted to let everyone know that I am doing better as well. My cae was finally turned over to attorneys to fight that battle for me. So far So good.
Continued Prayers - Kevin
p.s. Robyn, I don't mean to sound odd, but am I the only guy on here. My wife will come down and ask me while typing a message, "How are the girls doing?"
Just Curious
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Recommend Delete Message 3 of 6 in Discussion
From: <NOBR>byrd45</NOBR> Sent: 12/16/2006 4:11 PM
Hi Kevin,
Thanks! I am so glad to hear that things are going well with the prialt! That is wonderful news and I am so happy for you too. It sounds like even though it has some side effects at first,that the benefits outweigh the problems it causes. I hope things continue to go well, but it is nice to know that your doctor has a back up plan just in case the prialt stops helping. Hopefully things will continue to go just fine but it is nice to know that for your peace of mind.You don't sound odd asking about the other guys, but I have to laugh because almost every guy on here asks me the same question at one time or another lol.Us girls far out number the guys that is for sure. Probably because the disease happens more to woman for some strange reason. That's not to say there aren't any guyswith RSD or members here. They are here... right guys! There are about a dozen or so I think guessing off the top of my head although it might be a little more than that, but not less than than that. How's this any of you guys that read this and feel like posting and saying hi please take a minute and do that if you don't mind.This way you know that you are each out there. I think that would be a great idea not weird at all! Don't be shy now lol say hi okayYour wife sounds really supportive Kevin that's really nice. That's how my hubby is and I know how much it helps to have your spouse be understanding. After all it is hard for them too and for the other family members too.I give them alot of credit so many turn away when the person finds out they have RSD.Anyway I will keep you in my prayers that things continue going well for you and I hope you and your family have a very happy holiday and an even better New Year!
Love,
Robyn
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Recommend Delete Message 4 of 6 in Discussion
From: <NOBR>Liz3079</NOBR> Sent: 12/17/2006 10:28 AM
Hi Kevin
I am in Illinois ,on my second attorney and he is as bad as the first. How did you find you such a good attorney.I have got to fire this one .He is not fighting for anything for me.Do you always have to drive so far for treatment.I am miserable as can be. Just got over a spell with my back and Im hoping it isnt the rsd spreading since its mostly on the left side and my rsd has went from my left wrist up my arm to my shoulder and not so sure its spreading to my left torso area. Ive had this for over 2 years now. My lawyer says nothing that can be done for me other than take medication. He chose my drs for me to go to and they dont even seem to care.So I am really really miserable with a do nothing attorney who only wants to settle.I refuse to do that.Meantime my hand is just wasting away.
Love and gentle hugs.|
Liz
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From: byrd45 Sent: 1/3/2007 11:20 AM
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From: <NOBR>kregerpugs</NOBR> Sent: 12/18/2006 7:45 AM
Good Morning Liz -
The attorney I am working with is in Illinois. His name is Peter Polansky. The other attorney, who people say is just as good is Dan Capron. They are both near Chicago. My situation is kind of difficult. I hurt myself in Illinois, my company is based out of California, WC is in Illinois, I live in Indiana, and the best care I could find is in Ohio. Whatever I have to do, I am willing just to find SOME relief My RSD started in my left leg. It has since spread to both legs, both arms, most of my torso, and it seems to be spreading into my head and face (my mouth hurts all the time). If you are interested I know a great Doctor in Chicago. His name is Timothy Lubenow. He studied under my current doctor and is very familiar with RSD and its treatments.
Sorry if it seems I am rambling. I hope you have a great low pain day.
Kevin
----- Original Message -----
From: RSD Outreach
To: RSD Outreach
Sent: Sunday, December 17, 2006 10:28 AM
Subject: Re: My Ketamine Treatment(the journey goes on)
New Message on RSD Outreach
My Ketamine Treatment(the journey goes on)
byrd45- Admin
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continued.....
byrd45 Mon Jan 05, 2009 9:05 pm
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From: <NOBR>EMY2628</NOBR> Sent: 11/26/2006 10:40 PM
BEST OF LUCK ROBYN I WILL BE THINKING OF YOU AND PRAYING FOR YOU TOO, GOD BLESS
EILEEN
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From: <NOBR>Liz3079</NOBR> Sent: 11/27/2006 8:25 AM
Hi Robyn
I am hoping that the treatments do help you to ease your pain. It would be wonderful not to hurt wouldnt it.I forgot what that was like.I guess you have a good dr. who believes you and tries to get you the best help possible. I wish I had one like that. Gentle hugs.liz
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From: <NOBR>awife8281999</NOBR> Sent: 11/27/2006 3:54 PM
hope all goes good robyn. please take care and let us know how you are . hugs, tammy
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From: 2tall Sent: 11/27/2006 8:37 PM
Good luck Robyn, I'll be thinking of you and say many prayers.. I'm sure everyone will miss you .
2tall
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From: <NOBR>Liz3079</NOBR> Sent: 11/29/2006 9:06 PM
Hi
If anyone hears anything from Robyn could you please post it so we will know how she is doing. She sure seems like a great person. Everyone here is.
Love and gentle hugs.
Liz
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From: byrd45 Sent: 1/3/2007 11:03 AM
From: <NOBR>EMY2628</NOBR> (Original Message) Sent: 11/30/2006 2:30 AM
WE ARE STILL PRAYING THAT ALL IS GOING WELL, CAN'T WAIT TO HEAR YOU SAY IT WORKED WHEN YOU COME BACK. TAKE CARE AND GOD BLESS YOU
EILEEN
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From: <NOBR>Liz3079</NOBR> Sent: 11/30/2006 8:29 AM
Hi RObyn
Same here from me. We miss you. You are a good person. I hope the treatment helps.
Love and gentle hugs.
Liz
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From: <NOBR>glendapullum</NOBR> Sent: 12/1/2006 11:13 PM
Yeppers been thinking about you all week and keeping you in my prayers .Sure hope this is working for you .
hugs and prayers
glenda
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Recommend Delete Message 1 of 9 in Discussion
From: <NOBR>byrd45</NOBR> (Original Message) Sent: 12/4/2006 8:49 AM
Hi Everyone,
I got home on Saturday Evening sorry I wasn't up to posting until now. I have so much to tell you all but I can't stress my arms so this will have to be a series of posts over the next few days so I can get out everything I want to share with you all. First of all I really missed you all so much and I hope you have all been doing okay while I was away. I will slowly be catching up with all your posts as I am able to I can't wait to see how you all have been doing. Even if it takes me a little bit to respond know I am reading posts and thinking of all of you. I am really pleased with the results of the treatment. I feel so blessed I went into this telling myself I would be happy without whatever pain relief I got even if it wasn't total. Along with taking my meds during the five day treatment I was pain free the first time in five and a half years that lasted until Sunday.Even though some pain has come back in my arms and chest it has gone from a ten when I went into the hospital to anywhere between a 1 or 2 and a 4-5. I have had one spike due to muscle spasms which was more like a 7 last night but after taking my muscle relaxer it eased up.I feel it was well worth the results I am getting. The treatments are not over there are follow up treatments (boosters) several of these over the next I think he said three or six months. I'm not positive I was a bit out there when he was explaining it all to me. I will fill you all on that when I go back in for my next treatment which I thought he said was like 3 or 4 weeks.Alright have to stop typing for now but will come back tomorrow and fill you in on some more just have to take the typing in spurts. Big hugs to Everyone and enjoy your day!
Love,
Robyn
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From: <NOBR>Liz3079</NOBR> Sent: 12/4/2006 9:50 AM
Hi Robyn
I am glad you are back home and I bet your family is too. I am sure your boys missed you.Just because they are not little kids dont mean they no longer need you. I do think when kids get older they need mom even more.I wished when my kids were teens I would have seen that.They need lots of love and hugs as teens.
Glad you are almost pain free.Ive been in pain over 2 yrs now. Worked in pain for that amount of time till my place of employment closed. Iwas just miserable trying to work but my workplace said they had jobs for me,I couldnt go off on benefits from workers comp.They had a no lost time due to accident policy.They brought everyone back miserable.It must be great not feeling so bad as before. So how long is this supposed to last. Even temporary relief from pain would lift a persons spirits. I forgot what is was even like Robyn.
I really think the government needs to take us more seriously and work really hard to find us all a cure. Wouldnt it be great to go back the way we used to be. Just getting out of bed is now a struggle for me. Im sure some is from depression. I told my lawyer a long time ago I needed to see a psychologist or somebody just to talk to about what this is doing to me. Its just so hard to cope with.
You take care and post when you feel up to it. Dont want to overdo it and maybe mess stuff up .Want you to coninue feeling better.
Love and gentle hugs.
Liz
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Recommend Delete Message 4 of 9 in Discussion
From: byrd45 Sent: 1/3/2007 11:08 AM
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Recommend Delete Message 3 of 9 in Discussion
From: <NOBR>Liz3079</NOBR> Sent: 12/4/2006 9:55 AM
Hi everyone
I see Kelly from Alaska has posted on the crisis board again. Please dont overlook her .I dont always scroll down past the general messages but did today.She seems so nice.
love and gentle hugs.
Liz
Reply
Recommend Delete Message 4 of 9 in Discussion
From: <NOBR>RSDMom38</NOBR> Sent: 12/4/2006 11:17 AM
I am so glad you are home and safe.. Please take care of yourself..
Hugs,
Lorie
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Recommend Delete Message 5 of 9 in Discussion
From: Beckaboo Sent: 12/4/2006 12:39 PM
Hey Robyn,
I sure hope this has helped you I've known you for a really long time and
know all the pain that you as well as everyone eles on here are going
thru...I'm really glad to hear that you are home and feeling better...I wish
you,Earl and the boys and I don't want to forget your mother in law as well
as your extented Family on here a very Happy Holidays.....All my
luv.....Becki
_________________________________________________________________
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Recommend Delete Message 6 of 9 in Discussion
From: <NOBR>awife8281999</NOBR> Sent: 12/4/2006 8:54 PM
glad your home .. and glad you got to feel some of your pain ease ... i agree with comment said of finding a cure .. my heart goes out to you that the pain stays what it is now and doesnt come fully back . i will be praying for you. hugs, tammy
Reply
Recommend Delete Message 7 of 9 in Discussion
From: <NOBR>EMY2628</NOBR> Sent: 12/5/2006 12:38 AM
ROBYN,
I AM SO HAPPY FOR YOU, THAT YOU ARE HOME AND ALL WENT SO WELL FOR YOU. I WILL PRAY THAT THESE RESULTS CONTINUE FOR YOU AND THAT THE BOOSTERS WILL ONLY MAKE IT BETTER.
I MAY BE GOING IN FOR THIS TREATMENT NEXT, I'M NOT SURE I WILL FIND OUT ON THE 10TH, WHICH WAITING LIST I AM GOING ON, AND IT IS GOOD TO KNOW THAT THERE IS A CHANCE THAT IT MAY WORK FOR ME ALSO.
WITH THAT BEING SAID THOUGH, I AM OVERJOYED FOR YOU, IT IS JUST SO GREAT TO KNOW THAT THERE ARE TREATMENTS OUT THERE THAT WORK FOR US, WE JUST HAVE TO FIND THE RIGHT ONE FOR OUR BODIES AND OUR REACTIONS. I CAN'T WAIT TO HEAR MORE ABOUT IT. TAKE IT EASY AND DON'T OVERDO, THERE IS SO MUCH TO DO AT THIS TIME OF YEAR ANYWAY, YOU DON'T WANT TO PUSH YOURSELF TO HARD AND HAVE A SET BACK. I WILL KEEP YOU IN MY THOUGHTS AND PRAYERS
DO YOU MIND IF I SHARE THE RESULTS OF YOUR TREATMENT WITH ANOTHER GROUP I BELONG TO AS THEIR ARE MANY MEMBERS THERE WHO ARE VERY CURIOUS ABOUT THE KETAMINE TREATMENT AND ALSO ANOTHER OF DR S'S PATIENTS WHO MAY BE HEADING TOWARDS THIS TOO, AFTER SHE TRIES THE LIDOCAINE TREATMENT. I WILL WAIT TO GET YOU PERMISSION BEFORE I SHARE ANY INFORMATION YOU HAVE GIVEN.
YOU TAKE CARE AND GOD BLESS YOU.
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From: <NOBR>EMY2628</NOBR> Sent: 11/26/2006 10:40 PM
BEST OF LUCK ROBYN I WILL BE THINKING OF YOU AND PRAYING FOR YOU TOO, GOD BLESS
EILEEN
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Recommend Delete Message 4 of 7 in Discussion
From: <NOBR>Liz3079</NOBR> Sent: 11/27/2006 8:25 AM
Hi Robyn
I am hoping that the treatments do help you to ease your pain. It would be wonderful not to hurt wouldnt it.I forgot what that was like.I guess you have a good dr. who believes you and tries to get you the best help possible. I wish I had one like that. Gentle hugs.liz
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From: <NOBR>awife8281999</NOBR> Sent: 11/27/2006 3:54 PM
hope all goes good robyn. please take care and let us know how you are . hugs, tammy
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From: 2tall Sent: 11/27/2006 8:37 PM
Good luck Robyn, I'll be thinking of you and say many prayers.. I'm sure everyone will miss you .
2tall
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Recommend Delete Message 7 of 7 in Discussion
From: <NOBR>Liz3079</NOBR> Sent: 11/29/2006 9:06 PM
Hi
If anyone hears anything from Robyn could you please post it so we will know how she is doing. She sure seems like a great person. Everyone here is.
Love and gentle hugs.
Liz
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From: byrd45 Sent: 1/3/2007 11:03 AM
From: <NOBR>EMY2628</NOBR> (Original Message) Sent: 11/30/2006 2:30 AM
WE ARE STILL PRAYING THAT ALL IS GOING WELL, CAN'T WAIT TO HEAR YOU SAY IT WORKED WHEN YOU COME BACK. TAKE CARE AND GOD BLESS YOU
EILEEN
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From: <NOBR>Liz3079</NOBR> Sent: 11/30/2006 8:29 AM
Hi RObyn
Same here from me. We miss you. You are a good person. I hope the treatment helps.
Love and gentle hugs.
Liz
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Recommend Delete Message 3 of 3 in Discussion
From: <NOBR>glendapullum</NOBR> Sent: 12/1/2006 11:13 PM
Yeppers been thinking about you all week and keeping you in my prayers .Sure hope this is working for you .
hugs and prayers
glenda
Reply
Recommend Delete Message 1 of 9 in Discussion
From: <NOBR>byrd45</NOBR> (Original Message) Sent: 12/4/2006 8:49 AM
Hi Everyone,
I got home on Saturday Evening sorry I wasn't up to posting until now. I have so much to tell you all but I can't stress my arms so this will have to be a series of posts over the next few days so I can get out everything I want to share with you all. First of all I really missed you all so much and I hope you have all been doing okay while I was away. I will slowly be catching up with all your posts as I am able to I can't wait to see how you all have been doing. Even if it takes me a little bit to respond know I am reading posts and thinking of all of you. I am really pleased with the results of the treatment. I feel so blessed I went into this telling myself I would be happy without whatever pain relief I got even if it wasn't total. Along with taking my meds during the five day treatment I was pain free the first time in five and a half years that lasted until Sunday.Even though some pain has come back in my arms and chest it has gone from a ten when I went into the hospital to anywhere between a 1 or 2 and a 4-5. I have had one spike due to muscle spasms which was more like a 7 last night but after taking my muscle relaxer it eased up.I feel it was well worth the results I am getting. The treatments are not over there are follow up treatments (boosters) several of these over the next I think he said three or six months. I'm not positive I was a bit out there when he was explaining it all to me. I will fill you all on that when I go back in for my next treatment which I thought he said was like 3 or 4 weeks.Alright have to stop typing for now but will come back tomorrow and fill you in on some more just have to take the typing in spurts. Big hugs to Everyone and enjoy your day!
Love,
Robyn
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Recommend Delete Message 2 of 9 in Discussion
From: <NOBR>Liz3079</NOBR> Sent: 12/4/2006 9:50 AM
Hi Robyn
I am glad you are back home and I bet your family is too. I am sure your boys missed you.Just because they are not little kids dont mean they no longer need you. I do think when kids get older they need mom even more.I wished when my kids were teens I would have seen that.They need lots of love and hugs as teens.
Glad you are almost pain free.Ive been in pain over 2 yrs now. Worked in pain for that amount of time till my place of employment closed. Iwas just miserable trying to work but my workplace said they had jobs for me,I couldnt go off on benefits from workers comp.They had a no lost time due to accident policy.They brought everyone back miserable.It must be great not feeling so bad as before. So how long is this supposed to last. Even temporary relief from pain would lift a persons spirits. I forgot what is was even like Robyn.
I really think the government needs to take us more seriously and work really hard to find us all a cure. Wouldnt it be great to go back the way we used to be. Just getting out of bed is now a struggle for me. Im sure some is from depression. I told my lawyer a long time ago I needed to see a psychologist or somebody just to talk to about what this is doing to me. Its just so hard to cope with.
You take care and post when you feel up to it. Dont want to overdo it and maybe mess stuff up .Want you to coninue feeling better.
Love and gentle hugs.
Liz
Reply
Recommend Delete Message 4 of 9 in Discussion
From: byrd45 Sent: 1/3/2007 11:08 AM
Reply
Recommend Delete Message 3 of 9 in Discussion
From: <NOBR>Liz3079</NOBR> Sent: 12/4/2006 9:55 AM
Hi everyone
I see Kelly from Alaska has posted on the crisis board again. Please dont overlook her .I dont always scroll down past the general messages but did today.She seems so nice.
love and gentle hugs.
Liz
Reply
Recommend Delete Message 4 of 9 in Discussion
From: <NOBR>RSDMom38</NOBR> Sent: 12/4/2006 11:17 AM
I am so glad you are home and safe.. Please take care of yourself..
Hugs,
Lorie
Reply
Recommend Delete Message 5 of 9 in Discussion
From: Beckaboo Sent: 12/4/2006 12:39 PM
Hey Robyn,
I sure hope this has helped you I've known you for a really long time and
know all the pain that you as well as everyone eles on here are going
thru...I'm really glad to hear that you are home and feeling better...I wish
you,Earl and the boys and I don't want to forget your mother in law as well
as your extented Family on here a very Happy Holidays.....All my
luv.....Becki
_________________________________________________________________
Get the latest Windows Live Messenger 8.1 Beta version. Join now.
http://ideas.live.com
Reply
Recommend Delete Message 6 of 9 in Discussion
From: <NOBR>awife8281999</NOBR> Sent: 12/4/2006 8:54 PM
glad your home .. and glad you got to feel some of your pain ease ... i agree with comment said of finding a cure .. my heart goes out to you that the pain stays what it is now and doesnt come fully back . i will be praying for you. hugs, tammy
Reply
Recommend Delete Message 7 of 9 in Discussion
From: <NOBR>EMY2628</NOBR> Sent: 12/5/2006 12:38 AM
ROBYN,
I AM SO HAPPY FOR YOU, THAT YOU ARE HOME AND ALL WENT SO WELL FOR YOU. I WILL PRAY THAT THESE RESULTS CONTINUE FOR YOU AND THAT THE BOOSTERS WILL ONLY MAKE IT BETTER.
I MAY BE GOING IN FOR THIS TREATMENT NEXT, I'M NOT SURE I WILL FIND OUT ON THE 10TH, WHICH WAITING LIST I AM GOING ON, AND IT IS GOOD TO KNOW THAT THERE IS A CHANCE THAT IT MAY WORK FOR ME ALSO.
WITH THAT BEING SAID THOUGH, I AM OVERJOYED FOR YOU, IT IS JUST SO GREAT TO KNOW THAT THERE ARE TREATMENTS OUT THERE THAT WORK FOR US, WE JUST HAVE TO FIND THE RIGHT ONE FOR OUR BODIES AND OUR REACTIONS. I CAN'T WAIT TO HEAR MORE ABOUT IT. TAKE IT EASY AND DON'T OVERDO, THERE IS SO MUCH TO DO AT THIS TIME OF YEAR ANYWAY, YOU DON'T WANT TO PUSH YOURSELF TO HARD AND HAVE A SET BACK. I WILL KEEP YOU IN MY THOUGHTS AND PRAYERS
DO YOU MIND IF I SHARE THE RESULTS OF YOUR TREATMENT WITH ANOTHER GROUP I BELONG TO AS THEIR ARE MANY MEMBERS THERE WHO ARE VERY CURIOUS ABOUT THE KETAMINE TREATMENT AND ALSO ANOTHER OF DR S'S PATIENTS WHO MAY BE HEADING TOWARDS THIS TOO, AFTER SHE TRIES THE LIDOCAINE TREATMENT. I WILL WAIT TO GET YOU PERMISSION BEFORE I SHARE ANY INFORMATION YOU HAVE GIVEN.
YOU TAKE CARE AND GOD BLESS YOU.
byrd45- Admin
- Posts : 1014
Points : 343
Reputation : 0
Join date : 2008-10-29
Age : 60
Location : PA -
RSD and My Ketamine Treatment The Journey Goes On!
byrd45 Mon Jan 05, 2009 9:00 pm
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Recommend Delete Message 1 of 9 in Discussion
From: byrd45 (Original Message) Sent: 1/3/2007 10:39 AM
Hi Everyone,
I just wanted to let you all know that I will be going in to the hospital this Monday at 6 a.m. and will be inpatient for a week getting a Ketamine treatment. I have been on a list for quite a few years now and had to fight tooth and nail with worker's comp but finally I am able to get this treatment done. I am hoping and praying that I will be one of the lucky ones who benefit from this. I will keep you all informed to my progress when I get out and hope you won't mind holding down the fort for a week and a half until I am well enough to be back online. As always thanks for your understanding and support and any prayers are greatly welcomed.
Love,
Robyn
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Recommend Delete Message 2 of 8 in Discussion
From: <NOBR>grim_dragon0205</NOBR> Sent: 11/26/2006 1:36 PM
I have a dumb question. What is Ketamine treatment? How does it work for people with RSD? I have notice alot of people getting this treatment done.
missy
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Recommend Delete Message 3 of 8 in Discussion
From: <NOBR>Liz3079</NOBR> Sent: 11/26/2006 1:58 PM
Hi Robyn
Im like Missy .Dont know much about the ketamine treatment either. Do you have a Spinal cord stimulator.Or are you trying to avoid it. I have a friend who has only had rsd for a year and she already has one.She says they are a lot of trouble. She tried nerve blocks but they didnt help. She also broke her wrist and hers is frozen in place from never using it.You must have a really good lawyer.Are you allowed to talk to workers comp .My lawyer wont let me talk to them and he has told them not to talk to me. My gosh Robin,I dont lie or anything. Someone said maybe I should call the industrial commission. I did write the governor a letter about the last dr I went to.He was not a workers comp dr but theirs probably would have been nicer than this one. He was horrible and told lies.I talked to the administrator about him.she also told lies. I know stuff about the place as my friend goes to this pain management clinic although she had never seen the dr i seen. my appt wasnt even with him. that was probably way back in sept.Maybe your lawyer has handled other rsd cases. I hope you get to answer this as you might be under the weather awhile. Good luck tomorrow. Gentle hugs.Liz
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Recommend Delete Message 4 of 8 in Discussion
From: <NOBR>glendapullum</NOBR> Sent: 11/26/2006 2:12 PM
Hi Robyn
You'll be in my thoughts and prayers this next week for good results on your ketamine treatment .
Liz I have the spinal cord stimulator (1 1/2 yrs ) and love it have had no problems with it and its put me in remission .
Robyn and everyone else I should be around this week ,going to start decorating the house for the Christmas holidays .We're not doing the yard this yr since we are going to the middle daughters in Tucson for Christmas
hugs
glenda
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Recommend Delete Message 5 of 8 in Discussion
From: <NOBR>byrd45</NOBR> Sent: 11/26/2006 2:59 PM
Hi Missy,
That's not a dumb question at all. Ketamine is an anesthetic medication was mainly used to put animals under before they operated on them. It was used in humans as well but as I understand it that was awhile ago and then it was replaced by newer anestetics. What it does for people with RSD is it puts the nerves that are misfiring to sleep. By interrupting the cycle of the nerves constantly firing and sending pain signals to the brain the nervous system has a chance to reboot itself and in some cases can result in total pain relief or pain reduction and in some lucky people even remission.The length of how long the treatment lasts has been different for different people. I have heard anywhere between 3 -6 months and even longer. A year to 2 years or longer has been seen it just depends on the person. If you feel like learning more about Ketamine Treatments I did a Discussion on it awile ago. Go look in Past discussions it should be in there. If you have any trouble finding it just let me know and I will help you out when I get back from the hospital.
Love,
Robyn
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Recommend Delete Message 6 of 8 in Discussion
From: <NOBR>byrd45</NOBR> Sent: 11/26/2006 3:22 PM
Hi Liz,
I don't have a spinal cord stimulator. I think in my case they are shying away from that because of the problems I have with my spine but not sure. That procedure is helpful for some people with RSD it just isn't right for everyone but that is true of all the treatments. You really have to look at these treatments on a case by case basis and what type of problems the person has. Like in my case RSD isn't the only injury I have from when I was assaulted. It is definitely the worst part of it but they have to consider the risks and the benefits and see what outweighs what. I have been told never to talk to Worker's Comp that is my lawyers job and I am just fine with that. I have so much animosity towards worker's comp I think it is better if my lawyer is the one corresponding with them. That is probably why they don't want you talking to worker's comp so you won't get upset and have to deal with them. I took it the same way you did at first but really they are doing you a favor it is one less stress for you to deal with. Liz I know you aren't a liar and they know it too. They wouldn't be willing to settle with you if they thought you were lying. It is a business to them and unfortunately as hurtful as it is for us to know they only are concerned with how much they have to pay to get this business over with. Try not to let them upset you so much I feel for you so much. I went through these same hurtful feelings at their hands. The stress is so bad for you and I am hoping the whole thing will be over with soon so you can go on with your life. I know things are going to work out for you even though everything seems real crazy right now. If you are worried that you won't be able to work maybe you should consider applying for SSI. It is a possibilty to fall back on if you physically can't work which happens alot when people have RSD. Either way I think when all this comes together you will figure out what direction you want to turn.Keep hanging in there and I will talk to you soon.
Love,
Robyn
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Recommend Delete Message 7 of 8 in Discussion
From: <NOBR>byrd45</NOBR> Sent: 11/26/2006 3:24 PM
Hi Glenda,
Thanks for the good wishes! I am staying real positive and hopeful for the best result. I know when you are done decorating it will look so beautiful. Have fun!
Love,
Robyn
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Recommend Delete Message 8 of 8 in Discussion
From: <NOBR>EMY2628</NOBR> Sent: 11/26/2006 10:45 PM
ROBYN,
OH I REALLY HOPE THIS WORKS FOR YOU!!! I KNOW YOU HAVE HAD THE LIDOCAINE TREATMENT THAT I HAVE JUST HAD AND MINE WAS NOT SUCCESSFULL AT ALL. I AM SUPPOSED TO CALL THE DOC (DR. S.) ON DEC 10TH )30 DAYS AFTER MY HOSPITAL RELEASE) AND GET ON A WAITING LIST FOR EITHER KETAMINE OR "OTHER DRUGS" I DON'T KNOW WHAT THE OTHER DRUGS ARE, BUT THATS WHAT HE SAID. I WOULD BE SO HAPPY TO HEAR THAT THIS WORKED FOR YOU, THAT WOULD GIVE ME SOME HOPE TOO. HOW LONG WERE YOU ON THE WAITING LIST? WAS IT BECAUSE OF W/C OR WAS THE LIST THAT LONG??? I WILL BE THINKING OF YOU AND PRAYING FOR YOU EACH DAY. BEST WISHES, TAKE CARE AND GOD BLESS
EILEEN
From: <NOBR>byrd45</NOBR> (Original Message) Sent: 11/26/2006 2:45 PM
Hi Everyone,
Just wanted to say goodbye for now since I won't be able to post before I leave for the hospital tomorrow. I will miss you guys and be sure to check back with you all sometime next weekend either Saturday or Sunday if I am able to. If nothing else I will post and let you know I am home. Until then I hope you all have a good week with low pain levels and take care of each other while I am away.
Love,
Robyn
<NOBR> </NOBR>
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From: byrd45 Sent: 1/3/2007 10:49 AM
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From: <NOBR>byrd45</NOBR> (Original Message) Sent: 11/26/2006 2:45 PM
Hi Everyone,
Just wanted to say goodbye for now since I won't be able to post before I leave for the hospital tomorrow. I will miss you guys and be sure to check back with you all sometime next weekend either Saturday or Sunday if I am able to. If nothing else I will post and let you know I am home. Until then I hope you all have a good week with low pain levels and take care of each other while I am away.
Love,
Robyn
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From: <NOBR>Katiedid2256</NOBR> Sent: 11/26/2006 3:39 PM
robyn,i hope this treatment works for you,you are in my thoughts and
prayers.best of luck val
>From: "byrd45" <EARLIBYRD@msn.com>
>Reply-To: "RSD Outreach" <RSDOutreach@groups.msn.com>
>To: "RSD Outreach" <RSDOutreach@groups.msn.com>
>Subject: Just wanted to say goodbye before I go in the hospital tomorrow
>Date: Sun, 26 Nov 2006 11:45:17 -0800
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> Just wanted to say goodbye before I go in the hospital tomorrow
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> Hi Everyone, Just wanted to say goodbye for now since I
>won't be able to post before I leave for the hospital tomorrow. I will miss
>you guys and be sure to check back with you all sometime next weekend
>either Saturday or Sunday if I am able to. If nothing else I will post and
>let you know I am home. Until then I hope you all have a good week with low
>pain levels and take care of each other while I am away.
> Love,
> Robyn
>
>
>
Recommend Delete Message 1 of 9 in Discussion
From: byrd45 (Original Message) Sent: 1/3/2007 10:39 AM
Hi Everyone,
I just wanted to let you all know that I will be going in to the hospital this Monday at 6 a.m. and will be inpatient for a week getting a Ketamine treatment. I have been on a list for quite a few years now and had to fight tooth and nail with worker's comp but finally I am able to get this treatment done. I am hoping and praying that I will be one of the lucky ones who benefit from this. I will keep you all informed to my progress when I get out and hope you won't mind holding down the fort for a week and a half until I am well enough to be back online. As always thanks for your understanding and support and any prayers are greatly welcomed.
Love,
Robyn
Reply
Recommend Delete Message 2 of 8 in Discussion
From: <NOBR>grim_dragon0205</NOBR> Sent: 11/26/2006 1:36 PM
I have a dumb question. What is Ketamine treatment? How does it work for people with RSD? I have notice alot of people getting this treatment done.
missy
Reply
Recommend Delete Message 3 of 8 in Discussion
From: <NOBR>Liz3079</NOBR> Sent: 11/26/2006 1:58 PM
Hi Robyn
Im like Missy .Dont know much about the ketamine treatment either. Do you have a Spinal cord stimulator.Or are you trying to avoid it. I have a friend who has only had rsd for a year and she already has one.She says they are a lot of trouble. She tried nerve blocks but they didnt help. She also broke her wrist and hers is frozen in place from never using it.You must have a really good lawyer.Are you allowed to talk to workers comp .My lawyer wont let me talk to them and he has told them not to talk to me. My gosh Robin,I dont lie or anything. Someone said maybe I should call the industrial commission. I did write the governor a letter about the last dr I went to.He was not a workers comp dr but theirs probably would have been nicer than this one. He was horrible and told lies.I talked to the administrator about him.she also told lies. I know stuff about the place as my friend goes to this pain management clinic although she had never seen the dr i seen. my appt wasnt even with him. that was probably way back in sept.Maybe your lawyer has handled other rsd cases. I hope you get to answer this as you might be under the weather awhile. Good luck tomorrow. Gentle hugs.Liz
Reply
Recommend Delete Message 4 of 8 in Discussion
From: <NOBR>glendapullum</NOBR> Sent: 11/26/2006 2:12 PM
Hi Robyn
You'll be in my thoughts and prayers this next week for good results on your ketamine treatment .
Liz I have the spinal cord stimulator (1 1/2 yrs ) and love it have had no problems with it and its put me in remission .
Robyn and everyone else I should be around this week ,going to start decorating the house for the Christmas holidays .We're not doing the yard this yr since we are going to the middle daughters in Tucson for Christmas
hugs
glenda
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From: <NOBR>byrd45</NOBR> Sent: 11/26/2006 2:59 PM
Hi Missy,
That's not a dumb question at all. Ketamine is an anesthetic medication was mainly used to put animals under before they operated on them. It was used in humans as well but as I understand it that was awhile ago and then it was replaced by newer anestetics. What it does for people with RSD is it puts the nerves that are misfiring to sleep. By interrupting the cycle of the nerves constantly firing and sending pain signals to the brain the nervous system has a chance to reboot itself and in some cases can result in total pain relief or pain reduction and in some lucky people even remission.The length of how long the treatment lasts has been different for different people. I have heard anywhere between 3 -6 months and even longer. A year to 2 years or longer has been seen it just depends on the person. If you feel like learning more about Ketamine Treatments I did a Discussion on it awile ago. Go look in Past discussions it should be in there. If you have any trouble finding it just let me know and I will help you out when I get back from the hospital.
Love,
Robyn
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Recommend Delete Message 6 of 8 in Discussion
From: <NOBR>byrd45</NOBR> Sent: 11/26/2006 3:22 PM
Hi Liz,
I don't have a spinal cord stimulator. I think in my case they are shying away from that because of the problems I have with my spine but not sure. That procedure is helpful for some people with RSD it just isn't right for everyone but that is true of all the treatments. You really have to look at these treatments on a case by case basis and what type of problems the person has. Like in my case RSD isn't the only injury I have from when I was assaulted. It is definitely the worst part of it but they have to consider the risks and the benefits and see what outweighs what. I have been told never to talk to Worker's Comp that is my lawyers job and I am just fine with that. I have so much animosity towards worker's comp I think it is better if my lawyer is the one corresponding with them. That is probably why they don't want you talking to worker's comp so you won't get upset and have to deal with them. I took it the same way you did at first but really they are doing you a favor it is one less stress for you to deal with. Liz I know you aren't a liar and they know it too. They wouldn't be willing to settle with you if they thought you were lying. It is a business to them and unfortunately as hurtful as it is for us to know they only are concerned with how much they have to pay to get this business over with. Try not to let them upset you so much I feel for you so much. I went through these same hurtful feelings at their hands. The stress is so bad for you and I am hoping the whole thing will be over with soon so you can go on with your life. I know things are going to work out for you even though everything seems real crazy right now. If you are worried that you won't be able to work maybe you should consider applying for SSI. It is a possibilty to fall back on if you physically can't work which happens alot when people have RSD. Either way I think when all this comes together you will figure out what direction you want to turn.Keep hanging in there and I will talk to you soon.
Love,
Robyn
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Recommend Delete Message 7 of 8 in Discussion
From: <NOBR>byrd45</NOBR> Sent: 11/26/2006 3:24 PM
Hi Glenda,
Thanks for the good wishes! I am staying real positive and hopeful for the best result. I know when you are done decorating it will look so beautiful. Have fun!
Love,
Robyn
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Recommend Delete Message 8 of 8 in Discussion
From: <NOBR>EMY2628</NOBR> Sent: 11/26/2006 10:45 PM
ROBYN,
OH I REALLY HOPE THIS WORKS FOR YOU!!! I KNOW YOU HAVE HAD THE LIDOCAINE TREATMENT THAT I HAVE JUST HAD AND MINE WAS NOT SUCCESSFULL AT ALL. I AM SUPPOSED TO CALL THE DOC (DR. S.) ON DEC 10TH )30 DAYS AFTER MY HOSPITAL RELEASE) AND GET ON A WAITING LIST FOR EITHER KETAMINE OR "OTHER DRUGS" I DON'T KNOW WHAT THE OTHER DRUGS ARE, BUT THATS WHAT HE SAID. I WOULD BE SO HAPPY TO HEAR THAT THIS WORKED FOR YOU, THAT WOULD GIVE ME SOME HOPE TOO. HOW LONG WERE YOU ON THE WAITING LIST? WAS IT BECAUSE OF W/C OR WAS THE LIST THAT LONG??? I WILL BE THINKING OF YOU AND PRAYING FOR YOU EACH DAY. BEST WISHES, TAKE CARE AND GOD BLESS
EILEEN
From: <NOBR>byrd45</NOBR> (Original Message) Sent: 11/26/2006 2:45 PM
Hi Everyone,
Just wanted to say goodbye for now since I won't be able to post before I leave for the hospital tomorrow. I will miss you guys and be sure to check back with you all sometime next weekend either Saturday or Sunday if I am able to. If nothing else I will post and let you know I am home. Until then I hope you all have a good week with low pain levels and take care of each other while I am away.
Love,
Robyn
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From: byrd45 Sent: 1/3/2007 10:49 AM
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From: <NOBR>byrd45</NOBR> (Original Message) Sent: 11/26/2006 2:45 PM
Hi Everyone,
Just wanted to say goodbye for now since I won't be able to post before I leave for the hospital tomorrow. I will miss you guys and be sure to check back with you all sometime next weekend either Saturday or Sunday if I am able to. If nothing else I will post and let you know I am home. Until then I hope you all have a good week with low pain levels and take care of each other while I am away.
Love,
Robyn
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From: <NOBR>Katiedid2256</NOBR> Sent: 11/26/2006 3:39 PM
robyn,i hope this treatment works for you,you are in my thoughts and
prayers.best of luck val
>From: "byrd45" <EARLIBYRD@msn.com>
>Reply-To: "RSD Outreach" <RSDOutreach@groups.msn.com>
>To: "RSD Outreach" <RSDOutreach@groups.msn.com>
>Subject: Just wanted to say goodbye before I go in the hospital tomorrow
>Date: Sun, 26 Nov 2006 11:45:17 -0800
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> Just wanted to say goodbye before I go in the hospital tomorrow
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> Hi Everyone, Just wanted to say goodbye for now since I
>won't be able to post before I leave for the hospital tomorrow. I will miss
>you guys and be sure to check back with you all sometime next weekend
>either Saturday or Sunday if I am able to. If nothing else I will post and
>let you know I am home. Until then I hope you all have a good week with low
>pain levels and take care of each other while I am away.
> Love,
> Robyn
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Similar topics» FWD:Low dose Ketamine treatment
» RSD In the News : FWD:RSD In The News-link to two RSD videos about the Ketamine coma treatment
» Robyn's Journey with RSD
» My Journey To DX........Eileen's Story
» RSD and Ketamine Treatments
» RSD In the News : FWD:RSD In The News-link to two RSD videos about the Ketamine coma treatment
» Robyn's Journey with RSD
» My Journey To DX........Eileen's Story
» RSD and Ketamine Treatments
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