SCS & Pain Pumps For spinal cord stimulator (SCS) and pain pump discussions.

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Old 08-24-2010, 10:01 AM #1
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Originally Posted by jackiekennedy View Post
Hi Sarah Mae,

Its so good to read your posts and welcome!

I have just recently joined this forum and I cannot tell you how wonderful and welcoming all the posters are on here.

I have recently had an SCS implanted (17 days ago)...which Im still getting used to. I cant believe how young you are and suffering so much in your short life. I pray that you will get the relief that you deserve.

I will say that when I first went to see my Dr in the Pain Management Clinic which is now over 2 years ago, he mentioned the SCS to me on the first day, but only to tell me that it was something that we would look at a long way down the road that there were plenty of other options too.
I too went down the road of various meds which were prescribed by my Consultant each time I had surgery all of which my Pain Management Dr thought were driving me insane. Granted they werent helping me too much. I was taking Lyrica and Neurontin and I was totally confused, down, loss of memory feeling worse than what my pain was making me feel.

After numerous meetings with my Dr and trying out different options, (Rhizotomies, Lidocaine and Ketamine infusions, Spinal block injections, nerve block injections, Lidoderm patches(which I never thought were doing me any good, felt it was all in my head) but I kept using them , just in case they did click in one day. Finally in April this year I went for a trial for the SCS.......but you have to have a psychological test done, which I had in Novemeber 2009. This is basically a meeting to see how your feeling about yourself, life, your pain, your goals, your ambitions......not intimidating whatsover. This is a must and its your insurance company which will require this in making a decision.

I didnt find the trial too bad at all. Yes there are some needles involved, these are for 'local' My procedure took about 30 minutes. I had a wire sticking out my spine which was attached to my programmer. Sarah Mae let me say that this is the procedure that I had in Dublin Ireland, Im not so sure if its exactly the same procedure for you in America.

However, you sound like a person who is so well informed that you will thoroughly research all the procedures and wont be 'talked' into something you wont want to do.

I have to go for now but will be back later on and hopefully my little bit might have helped you somewhat.

Going to the hospital this morning to have my wounds reviewed and HOPEFULLY i will be able to have a shower from now on!!

Take care and talk later

Jackie
Jackie,

Wow. I hadn't realized how many people had commented on this post until I sat down and tried to respond to each of them! Nevertheless, I am grateful.

I'm glad you finally got your SCS. My doctor stated that he preferred to try the more aggressive forms of treatment first instead of trying countless things that won't work--like medicine has proven to not work for me. I know it will still take a while--there's hoops to jump through. Insurance, trials, scheduling, etc--plus I can't even start that process until this bone scan is underway--and that hasn't been pre-approved yet.

However, I have read so many wonderful stories of how many people have been helped through SCS, so I am getting more and more excited about this. I really hope the trial goes well and that it gives me some relief, because this could be the answer I've searched for... for what seems like forever!

I've read a few times that people had a long period of time after the surgery that they couldn't shower. That worries me a bit, because I feel so gross if I don't shower at least every other day. I used to shower every single day--but now it is much harder, so I shower almost always every other day, but sometimes if the pain is bad, it is every 3 days. How long did each of you (whoever is reading this) have to wait to shower after having your SCS implanted? I will request no visitors until I can get up and shower! haha.. gross! I had to wait 3-4 days to shower after my gastric bypass surgery, and even that was torture for me.

I look forward to getting to know you more as I walk along this journey!

Sarah
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♥ "Hope is more than a word; it's a state of being. It's a firm belief God will come through. Life brings rain... hope turns every drop into the power to bloom like never before." -Holley Gerth ♥

My name is Sarah and I am 25 years old. I have a lot of chronic health problems. Peripheral neuropathy and POTS (postural orthostatic tachycardia syndrome) keep me bedridden the majority of the time. I also struggle with degenerative disc disease, disc desiccation, spondylolisthesis, arthritis, polycystic ovarian syndrome (PCOS) with insulin resistance, allergies, sound sensitivities, and other health problems.
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Old 08-24-2010, 10:54 AM #2
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Default some help in the shower dept.

I found a great little product. They are adult pre-moistened wash cloths. They are expensive but boy are they worth it when you want to wash up and can't. You might like them. ginnie
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Old 08-24-2010, 04:11 PM #3
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Originally Posted by virginia neill View Post
I found a great little product. They are adult pre-moistened wash cloths. They are expensive but boy are they worth it when you want to wash up and can't. You might like them. ginnie
Actually, we used the baby ones for me. Cheaper, I think, but I smelled like....... you got it.

Mark56 PJ
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Old 08-25-2010, 03:06 PM #4
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Actually, we used the baby ones for me. Cheaper, I think, but I smelled like....... you got it.

Mark56 PJ

Sarah Mae..


I would love for you to pray for me..OMG..that would be wonderful..AND you like my used name..?? Well, it comes from my heart in that I trully believe we must hold hope and love in our hearts and begin from there... My favorite to do is share a smile or do something nice, like unexpected when others could use a life..It warms my heart... Great medicine.. simple and free!

Continue to move forward with your trial SCS and stay positive.. things always workout for the best...have faith and keep looking forward..the rest will take care of it's self... As far as myself..no pain pump, still have my SCS implant in my left hip area... but I have had many blocks and pain meds up the wa-zoo (can I say that?)..accupuncture..patches.. on and on..And my PM Dr. has sent me to Dr. S in Philadelpgia..he asked me to have the 5 day 'sleep' for Ketamine but my ins. will not play along with me so I am not even entertaining that thought..so I take each day as it presents itself, medicine free and keep smilin..the best I know how!!

You sound darling..Allow me to help you and please..there are no crazy questions when it comes to RSD!!! Its an ugly animal!!

love, Kathy
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Old 08-24-2010, 11:18 AM #5
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Originally Posted by Sarah Mae View Post
Jackie,

Wow. I hadn't realized how many people had commented on this post until I sat down and tried to respond to each of them! Nevertheless, I am grateful.

I'm glad you finally got your SCS. My doctor stated that he preferred to try the more aggressive forms of treatment first instead of trying countless things that won't work--like medicine has proven to not work for me. I know it will still take a while--there's hoops to jump through. Insurance, trials, scheduling, etc--plus I can't even start that process until this bone scan is underway--and that hasn't been pre-approved yet.

However, I have read so many wonderful stories of how many people have been helped through SCS, so I am getting more and more excited about this. I really hope the trial goes well and that it gives me some relief, because this could be the answer I've searched for... for what seems like forever!

I've read a few times that people had a long period of time after the surgery that they couldn't shower. That worries me a bit, because I feel so gross if I don't shower at least every other day. I used to shower every single day--but now it is much harder, so I shower almost always every other day, but sometimes if the pain is bad, it is every 3 days. How long did each of you (whoever is reading this) have to wait to shower after having your SCS implanted? I will request no visitors until I can get up and shower! haha.. gross! I had to wait 3-4 days to shower after my gastric bypass surgery, and even that was torture for me.

I look forward to getting to know you more as I walk along this journey!

Sarah
Hi again Sarah

Yes its true you cant shower for the first couple of weeks. Im now 19 days over my surgery and I have been back yesterday for a wound review and all is well. So Ive been told I can have a shower (well the elation was unbelieveable) I understand exactly how you feel as I shower everyday generally. But having my husband wash/blowdry my hair and help me wash was a sight for sore eyes!!!but hey we managed......

Dont feel 'gross' some soap and water whether its from a shower or just on a flannel will do the trick, or some wet wipes also..

You will be fine
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Old 08-24-2010, 10:51 AM #6
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Default the journey

I am on that journey too. I now await my NS to call and set up my second cervial fussion. This time C-3-7- enough said. I hate needles in the worst way. I was so anxious I threw up. For the whole week before I was hell to live with. I cried the whole time. I had my first spinal epidural. I submitted to this with fear, It was actually this same PS told me first about the CT. I had no bad effects from what was used on me Kanadol 80mgs. I had read all the horror stories about how bad theirs turned out. My two epidurals, did help. I was just as shakey the second time. I think my surgery will be before the next one is scheduled, so I will be hopefully not required to to it. My hope is of course my surgery will help. I did not experience very much pain at all. I can tell you the details, because he talked to me during the proceedure. He was calming to me, and understood me being nervous. I guess if I do indeed have to do it again, I will get through it better. I think so much of it is fear because we are in so much pain already. We do as humans not like pain so much. I would talk to you any time, I do wish you the best. I'm in for A
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