[hannah1234]

I have had a SCS implanted. Let me start off by saying that my rsd originated after surgery and a break in my right wrist in December of 2008. I went through a series of nerve blocks and lyrica and pain medicine, and I then decided with my doctor to try the SCS. As soon as I had it implanted, I immediately knew that it was helping my pain. I had my permanent stim implanted in June of 2009 in my cervical spine.

Before I had surgery, my doctor had me put on a bikini bottom of my bathing suit and he marked the incision where the battery would be, so I would be able to wear a bathing suit and not have a 4 inch incision popping out on my butt. He also had me talk to a few of his patients that have sucessful scs and then a few that did not so I knew what to expect both ways. This helped out so much knowing that I talked to some of his OWN patients.

So December of 2009 comes, and my SCS was working wonderfully, when boiling water got spilled on my right arm. My rsd then spread up my arm and across my back and in my shoulder. He did a series of ketamine to stop the spread. Now that my rsd is in my back and ( i think my hip and thigh as well, not diagnosed yet, but we know when we have pain in other places that is rsd pain...) The SCS does not work, it aggravates my back. It is just sitting in me as of now, turned off. About once a month I make sure that it is charged so the battery doesnt die.

My incion site on my hip has not really bothered me until about a week ago, but i think my RSD is spreading there, I have banged my leg on the corner of my bed as I walk by a few times and I think that did the trick. .

I was very happy with the SCS for when my scs was only in my right arm.

Also, when the Medtronics reps came in they were wonderful. One of the girls I used to work with at my old job, so I dont know if thats why they took good care of me but they were wonderful in explaining and not rushing me. When i came in to get reprogrammed, the man spent an hour and a half with me trying a million different settings, and then gave me 30 settings to go home and try, and then I tried all of them as I layed watching tv (kinda nice, gave me something to do) and then i went in and they paired the settings up that helped me the most. The reps were awesome, I have nothing bad to say about the ones in the LA area

We always have the risk of spread, and have the limits that we have to follow when we have this which could be a good thing because I dont think we should be doing that stuff anyways having rsd. When we are at that point of pain, we will do anything. My doctor would not opt or even discuss a pain pump because of my age, and I havent had children yet.

I wish that my SCS relieved my pain, it would help out alot more now, but when it did work I was happy with it. Any questions feel free to pm me.

[Rrae]

Hope you don't mind, I wanted to 'bump' your thread up closer to the top. This forum is growing by leaps and bounds! so many new folks are coming here excited to see all these testimonies! Isn't that fantastic!!

Your story is so amazing, and then the fact that after you had that accident with the boiling water.... things changed dramatically for you!
Your story needs to be 'seen' ! What amazes me the most about you is your strong FAITH! You've prayed and inspired so many people even during the midst of your roughest moments....
I just didn't want to see your wonderful story sink farther and farther down the line......especially with so many people coming here so hungry for feedback!

You are a true inspiration, Hannah. Thank you for giving so much to others!

What would you have to say to some of these folks coming here ?..... the reason they latch on to this forum is because this is REAL discussion from REAL people......Not doctor talk.....not corporate propaganda.....
and you, my dear, are a true champion if I've ever seen one!

Praying for you always
Rae

[Mark56]

And Hannah, I am one of the newbie folks who came looking for information, any information, hungry for information, thirsting for the pros and the cons as I approach what I think will be Trial surgery. I am now set for the mandated phychiatric eval before any implant surgery, even the Trial. It was curiosity regarding the eval which drew me into NeuroTalk because I was just clueless.

Once here, I found SO many more threads than mere pre-surgical eval that I got hooked and stayed. Learning about bumps, tweaks, satisfaction, dissatisfaction, hurts, incision pain, recovery, programming, and on and on brings a wealth of experiential STUFF to the table so we who follow may learn. Goodness, reading of the accident with boiling water which seems to have exacerbated your pain is a must read. Thoughts I have nurtured have included the hope for some return of normalcy [don't ask me do define that] to my life so some pre-injury activities might be returned to me.

Many thanks for your words of fore-knowledge, one who has gone before down the road. You inspire!

Much health and blessings to you,
all around,
Mark56

[mom of 3]

Hi Hannah, 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..

[hannah1234]

hi,

I would love to help you. I cant seem to PM you, but if you would like to message me with your information I would love to give you some more advice.

I do ketamine infusions every 2 months or so, and I am as close to remission as I can get. I dont use my scs right now. The thing is is that our bodies go through so much to begin with getting the implant put in, it took at least 6 months for mine to really work the way it was supposed to. And when my ketamine starts to wear off, I turn mine on to relieve my pain. My rsd spread to my back after hot water got dropped on my rsd arm so my doctor decided to go with ketamine. Honestly, i think EVERYBODY should get ketamine. It is a miracle worker, and gave me so much of my personality and life back. i am not fully pain free or back to normal. but if this is as good as it gets I am happy with that. If you would contact me with your information i would be more than happy to talk to you.

[Rrae]

Originally Posted by hannah1234

hi,

I would love to help you. I cant seem to PM you, but if you would like to message me with your information I would love to give you some more advice.

Thank you Hannah!

It is my understanding (regarding private messaging) that the new members aren't able to access that feature until they have a minimum of 20 posts. I may be mistaken, but I think that MAY be the reason you aren't able to PM her just yet.....
I'll have to re-fresh myself w/NT Guidelines on that to know for sure...

[hannah1234]

oooooohhhh oook... i sat here staring thinking... its missing a button!!!

[mom of 3]

Hi there, I'm not sure how this works..but would really like to talk to someone.. I need to post a few more time to have a private chat? Thanks so much for getting back to me, I cant believe how many people have RSD I never heard of it until being diagnosed. I feel alone and wish I knew what the future has in store for me, I'm lucky to have a wonderful family but they still have NO idea what I'm going through.

[hannah1234]

yep I guess so. We have ALL felt that way and still feel that way to some degree... it is alot of accepting of a new lifestyle. i was really young when I was diagnosed and have came a long way. We have no idea the future, for me I will be honest. I dont look at whats tomorrow. I just deal with today, right now. Because when I start to worry about more... my stress goes up which means my pain goes up. Keep talking on here, we all have gone through the same emotions and i think I can speak for all of us that we have all shed ENOUGH tears. But crying only excites the nervous system which results in flares. I know you could and do relate to all of us. Read back on alot of the posts there is alot of information that can be sooo helpful to coping in our daily lives... dont give up. there is hope...

Originally Posted by mom of 3

Hi there, I'm not sure how this works..but would really like to talk to someone.. I need to post a few more time to have a private chat? Thanks so much for getting back to me, I cant believe how many people have RSD I never heard of it until being diagnosed. I feel alone and wish I knew what the future has in store for me, I'm lucky to have a wonderful family but they still have NO idea what I'm going through.