[mom of 3]

I'm new to this site..I was diagnosedwith RSD about 7 months ago the pain was so horriable I thought I would go crazy, mine started when a display of canopies fell on my heel of my right foot crushing my foot it was awful I had my scs surgery on Feb 24,2010 and after a couple weeks started feeling great was able to walk and also started driving again but then last week the swelling and color change along with the spasms came back also in my left foot..when I turn the device up its way to strong and shocks the heck out of me..I am a mom of 3 little girls and its killing me that I'm not there for them do you know any other treatments that can possibly help? or am I expecting to much to soon..

[Leesa]

Hi ~ I know RSD means pain basically all over, but where was the SCS supposed to work? Where is the most of your pain located? Is it in your back/leg/foot???

I'm wondering if the Morphine Pump wouldn't work, since the morphine bathes the nerves and basically numbs them. I had the trial for it, and I was pain-free for the first time in 20 years!!! Unfortunately, I couldn't have the pump. You might ask about it and see if it might work for you. I had the SCS and it drove me nuts. It irritated things even more.

Best of luck and I hope whatever is decided, it relieves your pain! God bless. Hugs, Lee

[Rrae]

Originally Posted by mom of 3

I'm new to this site..I was diagnosedwith RSD about 7 months ago the pain was so horriable I thought I would go crazy, mine started when a display of canopies fell on my heel of my right foot crushing my foot it was awful I had my scs surgery on Feb 24,2010 and after a couple weeks started feeling great was able to walk and also started driving again but then last week the swelling and color change along with the spasms came back also in my left foot..when I turn the device up its way to strong and shocks the heck out of me..I am a mom of 3 little girls and its killing me that I'm not there for them do you know any other treatments that can possibly help? or am I expecting to much to soon..

I am SO sorry to hear this!!
RSD is IMO the meanest condition on the face of this planet.
So, your left foot had NO pain prior to the SCS, is this correct? And since then, now BOTH of your feet have the pain?! Oh my!

So, at first you had great results and were feeling good. Now recently the pain is returning.....
As far as the 'shocking' you describe from turning the SCS up higher, I'm hoping that will be a simple matter of a re-program session. Have you gone for any 'tweeking' yet? Hopefully they will be able to create a few new programs with adjustments to the parameter and amplitudes. And the pulse width (or rate) seems to make more of a 'smooth' sensation the faster it is set on. I don't like the 'thumping' feeling it creates when the pulse is slowed down to under say....25) - Medtronic Model.....not sure how the other companies are programmed or designed.

Is your doctor aware of what's going on?
Please let us know what he has to say about this! Maybe the reprogramming will help.....but if you are dealing with an RSD spread, PLEASE make sure the Dr is aware! Don't let him put you off!

Prayerfully
Rae

[mom of 3]

Hi there, I had no pain in my left foot until 4 weeks after my surgery, my right foot was fine until a week ago but now instead of being very cold and purple it's now hot and burning it's the craziest thing ever my foot actually sweats now and is very swollen. The SCS works for the pain that is now going up my leg but my foot is still bad, worse when I walk..dont know where to go from here I did try the nerve block and also had a catheter placed in the back of my knee for 2 weeks that didnt work. I seen my Dr on Monday and he put me on Anti inflammotory meds and my Rep from Medtronics also tried to reprogram my device but from my understanding the leads in my spine are to high?? if that makes sense so this might be to soon to see if it works I just need someone to talk to because I do feel scared and alone and I worry that this could get worse and I have 3 babies at home and I'm not 100% focused on them.

[abrown176]

Hi! I am 28 and I have two kids. They are 6 and 7. I so know how you feel. I have RSD in my left foot and ankle. It has so slowed me down and I just can't be the mother I want to be. We use to go to the park all the time and visit friends. Now I'm lucky if I can just go outside and watch them in our front yard. I had my SCS put in April 09. I just had my third surgery a week ago to reposition the battery and repair it were I fell two months ago over my sons bike. They can't move my lead up to help with the back pain I have developed since all the surgeries or it will no longer reach my foot. I am now either walking with a cane or wheelchair bound on long trips. I so want to be the mom that I use to be. My son played his first Tball game last weekend and I went to see him play. I try not to let the pain get to me so bad but it is so hard. If you ever need anyone to talk to please feel free to PM me or just write back. Were are you located. I live in North Carolina and I don't know anyone around here who has this terrible thing. Hope your feeling some better and enjoying your children. They are such a blessing and I just want to be everything I can be for mine and I know you do to. Maybe we can get to that place some day. Good Luck and hoping the best for you and your family.

Yours Truly,
Angela

[mom of 3]

Hi Angela, I'm so sorry that your also in so much pain..I live in Michigan and I dont have anyone to talk to either, I found this site yesterday my Dr told me to find one I'm amazed how many people have to deal with this.

my girls are 4,7,9 and before the surgery I couldnt do anything after about a week after surgey I felt a little better now its been 5 weeks and the pain is coming back worse if I'm walking..I just dont know what to do and I'm terrified looking at some of these comments and knowing this could happen to me the spreading of the disease. Thanks for taking the time to talk to me, North Carolina is Beautiful we go to Ocean Isle beach every year.

[Rrae]

Mom of 3, reading your posts breaks my heart because you so desperately want this to work for you and you've got 3 precious girls, so young.....
It's such a helpless feeling 'knowing' exactly how you are feeling....yet, not knowing what to say!
I just realised, you and I had our implants on the SAME day!

I'm hoping your Dr and Medtronics Rep are in good communication......maybe since it's been so soon that the leads have been placed it would be possible to move them a bit lower B4 scar tissue sets in......? I don't know how that works, but it's a hope I have in your case...... since your Rep said the leads were a bit too high in your spine..... my hope would be that the Dr could just move them down a tad.

Like Angela says, she's had several revisions.......

I dunno guys it just doesn't seem fair.
Here, we get the wonderful precious gift of our beautiful children, yet have to fight so hard just to have a 'good' day....

I'm thankful that this forum has connected you both, being that your situations are so similar.....
My boys are older (15yr old twins) and getting more independent......
I just sit here with a heavy heart knowing that there are you two wonderful mothers miles apart fighting the same pain and trying so hard to be everything that you can be for your young children

I try to be 'uplifting' and 'lighthearted'....but the reality of all this just gets the best of me some days

All i know to do is .....keep praying


Truly Caring....
Rae

[Hicktomboy]

I hope you are doing better now with the anti-inflammatory meds. Any chance you picked up an infection from the surgery??? If you are so newly implanted, maybe they can go back in and reposition the leads to try to correct the problems that you are having now. Any chance you've ever had an RFA or nerve blocks for the pain? If not, maybe one or both would be helpful?

[abrown176]

Hi hope your doing well. I have not heard from you in a while. I hope everything is good and your feeling better. Still would love to chat. I didn't know if you could private message yet. Hope to talk soon.

[miserable in wyomin]

[QUOTE=mom of 3;641591] PLEASE dont give up on ur scs yet. it takes time for the leads to really settle in and all of the tissue to calm down post op. You are lucky to have gotten the scs so soon. I had to wait two years trying this drug and that drug. I am a single mom, and i feel ur frustration as far as ur children goes. Try to do ur best at following the proper body mechanics ur dr has recomended for healing time. I have found that it some positions my scs is stronger than in others. So you try that as well as working closly with your dr. and scs reps to get your scs set right for you.