MDJunction - People Helping People
 
Ask a Question
04/01/2012 11:06 PM

SCS(page 3)

cindy61
cindy61  
Posts: 540
Member

Swimmom, If they are in your neck it's going to happen until you get the permanent one. I remember the 1st night trying to sleep and I would get zapped if I moved a little. I even started to cry. I felt like I had some foreign thing in my neck and I could not sleep. The next day I called the doctor who put it in and he reasured me that when they put the permanent one in that it wont do that. You must not move your neck after surgery and wear a soft brace until the doctor decides you can take it off.

Good luck!!

Cindy

Reply

04/02/2012 03:57 PM
Chrissy33rsd
Chrissy33rsd  
Posts: 49
Member

I hope you are doing better. Can i ask why your husband is grossed out? You dont have to tell me. My radio frequency seems to have caused my rsd to spread. So the dr is again pushing the scs. So i was just wondering. I thought my pain couldnt get worse but it has. All i want to do is play candyland with my kids without wanting to cry cause of the pain. Enough about me. I really hope you are doing good and any info would be great. Even if you would do it or not.

04/03/2012 02:44 AM
maddiesgram
maddiesgram  
Posts: 2330
Senior Member

Chrissy,

I'm just sorry that your pain has increased. I know you were really hopeful. Still have hope, OK, because I believe something will come along or something that exists will be helpful for you. Hang in there!

gail


04/03/2012 04:25 AM
Chrissy33rsd
Chrissy33rsd  
Posts: 49
Member

Gail,

I am trying to be hopeful but i cant. I listened to the dr had the radio frequency neurmy or whatever its called done in my foot (orignal sight of injury). He said he only lightly did it in case he had to go back in. Lost sime feeling and had some relief but not really. And now it has spread up my leg and to my knee and hip and lower back. I called and he again thinks the only option is the scs. They have put me on methadone too. And i have still in pain. So i am sooooo frustrated.


04/03/2012 05:56 PM
maddiesgram
maddiesgram  
Posts: 2330
Senior Member

Chrissy,

I know you are frustrated, and probably miserable, and probably scared. I sure wish there was an answer to give you that would help and be simple. You might like the SCS. I guess they say it's about a 50/50% chance of it being helpful to a patient. The past three months I've had significant spread, too, and I'm scared. Have you ever asked your doctor about ketamine? That's what I'm interested in, but don't know if I'll ever have a chance to see if it will help.

I really hate it when the docs tell us that the ONLY option is the SCS. That burns me up for some reason. Then, find more options! My first pain doctor who I was sent to right after my RSD diagnosis did 3 lumbar sympathetic blocks and he seemed like Dr. Wonderful, but when the blocks didn't work he was GONE and I could ONLY see the PA. I was scared and he had never taken the time to tell me anything about RSD or what to expect, and then when I asked for an appointment with the doctor, he came in and told me very bluntly that the ONLY thing he had that he would do for me was a SCS. He had the reps from the company he's with really hard-sell me and it was very uncomfortable. He was not willing to do pain medication other than Lyrica which his really stupid PA put me on way too much and it caused many problems. It was a bad situation and I felt like he was taking advantage of my fear and pain by telling me that it was my ONLY choice. So, I left and found another pain doctor.

I've been on many of the medications and it sort of scares me but I am grateful to have something to bring the pain down some. We had big storms come through here today and lots of tornados, and my pain was bad, but I did have medication that helped and I am always grateful that I do. At one point I put my "emergency" stuff in my closet with flashlight, whistle, and a few other things in case I had to run in there and take shelter. I put my pain meds in there to have them with me in case we got hit!

Try to just take it one day at a time because six months from now you might be getting a treatment that truly helps. Live today only and try not to think. Keep making yourself move. Try to find things to distract you and things to enjoy. I'm not at all suggesting that your doctor is bad and if he seems like a smart guy and you're comfortable with him, I sure would stay with him. My first doctor was just rude unless he was performing a procedure where he could make lots of money. My current doctor spent 2 years telling me that he couldn't come up with anything other than a SCS, but he did look into ketamine and also is willing to help me find medications that help. I appreciate that. He stopped saying anything about the SCS when he realized that I truly meant that I couldn't afford it. He was actually nice about it and has tried to help me with medications that I can afford. He's far from perfect but pain doctors can be hard to find and I can't drive very far anymore.

Sorry for rambling, I just got upset that you feel without options. I truly believe that more options will be coming along for us. Maybe I'm naive. Does a TENS unit help you? Have you thought about acupuncture or even massage therapy to help you feel better at least? Keep coming here because this group has held me up a couple of times when I hit the bottom. I'll be thinking of you!

gail


04/03/2012 06:19 PM
cfthb
cfthb  
Posts: 873
Group Leader
I'm an Advocate

Chrissy, I'm bothered by the fact that you've never mentioned having any medication to kill the breakthrough pain we all suffer when the long-acting one (like methadone) doesn't do the job. Standard practice is for RSD patients to have two analgesics - one long-acting that we take on a schedule, and a breakthrough med we use only when needed. Since you've said your PMP listens to you, I definitely recommend bringing this up.

I have found that, generally, it's very hard for real progress to happen when we're in pain all the time. When I was trying to fight the pain, my mantra was that remission will never occur as long as I still hurt. It turned out to be true, also. Sometimes we have to get pretty assertive about our needs, but it's a survival skill that I wish everyone would take to heart. The squeaky wheel, and all that. I used my pain to motivate me to get assertive, sometimes even aggressive (who, me? Wink) to get what I needed.

Howard

Post edited by: cfthb, at: 04/03/2012 06:20 PM


04/04/2012 05:15 AM
Chrissy33rsd
Chrissy33rsd  
Posts: 49
Member

Howard

I asked you this in the other discussion but can you take anything else when your on methadone? I dont have anything for breakthru pain. Any recommendations.

Gail

I know i am soooooo frustrated. He told me he was a specialist in rsd and its on his website. But he is still pushing for scs. And will probably do so on thursday. He is slowly handing me off to his pa too. He does procedures and seems to think if i dont want to do this one than he is done. He did call me a agree to take an appt with me and his pa tomorrow thats why i started another duscussion on meds. Trying to get more info. he said maybe more nerve blocks and mri of my back but thinks scs is my only option.


04/04/2012 05:52 AM
revvanbus
revvanbus  
Posts: 2032
VIP Member

Chrissy, there are so many options available for treating our pain. Don't let this or any other pain doc coerce you to "try" any treatment that involves surgery or a therapy that can increase your overall pain or the areas of your body that can be affected (spreads) without you having thoroughly research the options and being in total agreement. A doctor who tries this is not a partner with you in your treatment and will probably not let you in on making descisions for your own treatment. I might try the father. Might be an improvement; or try another pain center/pain doctor. Just because a doc claims to be an authority on RSD/CRPS does not mean he/she is one. There are only a fairly small number of docs/centers that have the experience and expertise to be recognised as such. My personal experience told me that I would almost rather be with a doc who has limited experience but lots of interest and "trainability" (willing to read articles, do his/her research, ask other experts) than be with a doc who is not recognized but claims expertise and won't even read articles or research on-line. That is just my personal view on the subject.

The short acting oxycontin (morphine) worked for me as a breakthrough pain med. Howard can hopefully tell you with authority of his profession and his research about mixture of methadone and other narcotics.

Rev.


04/04/2012 06:09 AM
Fletch2ya
Fletch2ya  
Posts: 3183
VIP Member
I'm an Advocate

HI ... Everyone... I am going to have to ask you to keep each discussion to be kept to the TOPIC at the top of the page....

IF you want to ask a different question, please look in the old post and see if the heading is there... IF not start a NEW thread..... BUT please we must stay with the topics at the top of the pages....

This is important, so that anyone that is doing any research here can go to the subject of the post and get answers on that topic.

Thank You

Craig

Post edited by: Fletch2ya, at: 04/04/2012 06:18 AM


04/04/2012 06:25 AM
Fletch2ya
Fletch2ya  
Posts: 3183
VIP Member
I'm an Advocate

HI.. this is just a slight correction, oxycontin is not morphine.

Here is a google search of it..

Is there morphine in Oxycontinwiki.answers.com Ӽ ... Ӽ Medication and Drugs Ӽ Painkillers Ӽ MethadoneCached - Similar

No, there is no morphine in Oxycontin. Oxycontin is very similar to morphine though. Oxycontin is a semi-synthetic drug made from modifying codeine.

Thanks

Craig

Reply

Share this discussion with your friends:
<< Start < Prev 3 Next > End >>


Disclaimer: The information provided in MDJunction is not a replacement for medical diagnosis, treatment, or professional medical advice.
In case of EMERGENCY call 911 or 1.800.273.TALK (8255) to the National Suicide Prevention Lifeline. Read more.
Contact Us | About Us
Copyright (c) 2006-2014 MDJunction.com All Rights Reserved