Decision made on my SCS...
 

Hi guys! So I saw a new neurosurgeon today and we have all decided that the best thing is to remove my two spinal cord stimulators. Surgery is not scheduled yet, but I am shooting for sometime after Christmas.

I am having a bladder procedure this Monday...so much going on...:(

This has to be a difficult decision, I know the implantation was a pretty big ordeal. How long have you had the SCS's.

I guess as long as you've been on this forum, you must know thehuge amount of prevention and precaution you have to take before any surgery? I've read some of the bladder issues you've had and it sounds very necessary.
If you don't have it already, I'm sure Kevscar will be sending you hospital/surgical protocols. I got them as a reminder and it helped!
Please keep us posted on how it all goes. :hug:

Thanks! Yeah, definitely a tough decision. I had them implanted in June 2011 and a revision on the thoracic one in November 2011. If I had to do it all over again, I would get them. They helped me so much. They helped me gt through another 1 1/2 years of work...I know I would not have made it through without them. The thoracic lead has migrated again, the battery is twisted, I get back pain/pressure/spasms when they run...the effectiveness has worn off.

I liked the new doctor I saw today and knew I wanted a neurosurgeon to do this. He recommended removal over a revision. I agreed.

I have seen Kevscar's info in the past, I will look for it again. Yes, the procedures are necessary and I will be happy to have them both behind me.

oh boy, I hear ya. My head is spinning with how much is going on. Best of luck on Monday Nanc. I hope everything goes real smooth.

Good luck with everything Nanc :). I know you must be really nervous, but sounds like you and the surgeon have made the right choice - if the issues with it are outweighing any benefits, then it's hopefully going to improve things for you overall....

Will be thinking of you :hug:

Bram.

Best of luck to you on Monday...

AZ-Di I won't be sending anybody anything anymore or doing anymore posting, I accidently deleted everything 4 years well over 3000hrs of research, all the papers the letters the petitons the graphics gone and due to the lack of people willing to stand up and fight,, US petition only needed 25,000 from 1.9 mill sufferers in 30 days, less than 800 signed. In the UK only 5 or 6 have said they e-mailed their MP's so I'm done

Can I ask, if you had already been forced to stop working for several years, would it have been worth all you've gone through for the temporary results? TY!

Hey Lit Love. I would do the same thing over again...but maybe just with a different doctor. The SCS's helped me get through my last year and a half of work. The SCS's also helped with desensitizing my hands and increasing the movement in my left shoulder/arm (it was pretty stiff and I had limited movement). So for me, they were beneficial. Now, I have had some other issues with them (another lead migration and battery is twisted) and the effectiveness has worn off. So they need to go.

Gosh Kev I'm sorry :( that's terrible after everything you've tried to do.

I have the protocols etc if anyone needs them.

Bram.

Good luck
 

We all hear will be praying for you.We all hope you receive good care and a good bennifit from it..God Bless

Thanks for all the good thoughts and well wishes, they mean a lot! You guys are awesome!
Nanc
:hug:

NOoooooooooooooo! OMG that made my heart sink

good luck nanc
 

i'm so scare in my case dr never wanted to order an X-ray to make sure everything is fine,i had such of pain for months already and his solution keep being re position my scs battery in my abdomen,is a nightmare i requested a 3rd independent opinion but my good luck it will be until jan mean while i will keep living with back and buttock pain for almost 2 more months n considering is a wc case my employer keep denying me from coming back with light duty i really want to give up and take off as well but i did have relief after my surgery in jan 2013 on my injury site which is my right foot i won't be able to have surgery there unless dr release me from crps treat condition,I'm driving myself crazy thinking that soon i will be unemployed,i hope u get better soon thanks for all the info you provide us thats a great help and a guide as well,hope u the best and God bless u and all out here.

Hi Nanc, I hope that you feel better soon. Take care.

happy thanksgiving Nanc
 

hope you get better soon and don't worry ,we all here waiting for your good news soon,God will finally give you the relief you deserve,blessings to you and your family from one more new member of your rds/crps family, Jesika aka eevo61.
:grouphug: blesssings to you all.

Surgery date set...
 

So the date for my SCS removal has been set for Jan 9th. Will be happy when this is over with!

Also, found out this afternoon that the bladder procedure and biopsies I had last week confirms that I do indeed have interstitial cystitis :( It really sucks because, like with RSD, I cannot tolerate any of the meds or treatments they use. So, it will be following a special IC and low oxalate diet...that on top of my gluten intolerance and allergies will make it extremely difficult...ugh!

As a fellow coeliac Nanc, my heart really goes out to you...it does indeed suck. Completely. But as with the gluten-free diet, hopefully eating this new regime wil help you feel better.

I'll be thinking of you, and have all fingers and toes firmly crossed ;)

Bram.