Jackie,

I've thought about removing the stim - I've talked to the doctors. Right now, we are all thinking that leaving it off and alone might be the best thing. Removing it is another surgery, especially since I have a paddle. Right now, I'm just taking the regular pills and using the "magic" compounded pain cream.

I was reading through this post and can definitley relate to this too. I have one setting that if set high to reach the pain from my SI joint, I not only get muscle twitches in my abdomen, but my bladder starts shaking too....need I say more?

Rhonda

I ahve been using my stim on higher setting and have noted with the higher setting, the bladder is more difficult to control, i.e. if you get the signal that you need to go, then RUN to the nearest toilet.

I am sorry the difficulties are plaguing you MrsCJM, Patti, and RhondaIndy, gee, it sure doesn't fall into the realm of what you had expected or hoped. I pray that real solutions are found for you all, and soon.

Mark56

Oh MY!!
I was sure hoping you'd join in on this thread!
That link you provided is really SOMETHING! A REAL EYE OPENER!!!
It spells it out so plain and clear! Yes, it is scary ...... and I have fears that I am dealing with spreading issues....and when I read thru that webpage, my jaw was agape and my eyes popping out!!
I fall in to many of the categories and symptoms it describes...!

There is NO ONE around my area who could have explained RSD and the stages the way that did.

Again, thank you Patti!

Rae

No problem Rae . I made my poor husband read it as well. I skimmed it because I didn't want to "be the one that pointed out that I had that symptom" because sometimes it can go to your "mind". Besides, he needs to help advocate for me.

I am so glad once again to have found this forum. Reading what has happened to others, the good and the bad, has been helpful and served as a motivator to me to ask questions and really look and think of things.

Another doctor's appointment is scheduled for me today, I did let them know that the stim still isn't quite right. I guess I find out what happens now and the next plan of action when I get there.

In talking with my Medtronic Rep on Wednesday, I did ask him if he has ever seen or heard of anyone that has treated with Ketamine. He did say that the dangers of this would definitely not be worth a try with me, especially given the fact that every plan of action has gone wrong. He did mention something about a snail toxin (can't remember the name), but I'll be talking with my doctor about it today.

Take care everyone, and remember - it's your body and no matter how crazy the doctors look at you when you are describing your pain/symptoms, that it's their job to either fix you or refer you to someone who might be able to!

Hi Patti

I was treated with Ketamine before I had the SCS implanted. I had it infused together with lignucaine...which I had done every two/four weeks. Have to say it wasnt a success for me at all. I had it through an IV and I had terrible hallucinations with it, so in the end I say no more as it wasnt helping at all with my pain....

I do hope that you get some answers today

Jackie

Well, hubby and I decided that since the roads are nothing but ice and two parts of two highways are closed near us, we aren't going in today. I called and re-scheduled for the soonest day Dr Gupta will be there. Apparently, he first "next" appointment is for the 14th of March!! I guess I should have just kept my appointment for today, but I hate going out in crappy weather. Since the car accident, I am a total freak in the vehicle. My blood pressure would have been through the roof!

I guess I just grit my teeth for the next 10 days unless they have a cancelation or can get me in sooner. I prefer having just the "one" doctor, but this makes it hard to receive prompt treatment.

Patti, thank you for your response. I am soooo sorry for your situation... it seems to be a conundrum with no answers. I must plead ignorance to your condition. I have not heard of RSD until now. That sounds like a tough one! My condition began with two failed lumbar discs at the top of the sacrum. I had them fused 6 or 7 years ago. Since then the degeneration has moved up another level, which I had fused to the original fusion. Now the next two discs above that are gone. I have a condition that just keeps moving up the spine. I was told that 10% of people with back fusions will experience this. I guess I fall in the 10%. It should actually stop now that it has reached the top of the lumbar spine. It virtually never moves to the thoracic spine.

My paddle went in at T8. Do you know at which vertebrae they inserted your paddle leads?

I am beginning to conclude that the stimulators placed higher in the spine are the most problematic. My trial implant was more near T10-T11. But I felt too much of the sensation in my legs and also my feet. Most of my pain is across my back with only some pain down the outsides of my thighs. I do not have sciatica anymore. That was alleviated with the fusion of L4 - S1.

Stay warm and I'll be sending good thoughts.

McCJM its interesting to hear that your sciatica went when you had your fusion from S1 - L4.... I wish mine did I too had this fusion done) only now to have like what you say, the domino effect I call it......once they did those two fusion, they were separate operations, I now have a problem with my L2/3, because the fusion is putting pressure on those now I have been back to my Consultant to see if anything else could be done, but it was him that said I should think about the SCS.

I also have terrible burning up at my shoulders and neck and Im dreading to think if it is travelling further up!

Im glad to hear though that you are getting good coverage with your SCS...

Mine is my lower back and down my legs. As my SCS is above the fusion , L1/L2 I do have it in my legs and have to turn it up for my lower back....which isnt always a success. After reading alll the different procedures that the people on here have Im beginning to think that maybe I should have asked about the paddles as more people seem to have more success with the paddles. But its early days for me yet so will see how the next reprogramming session goes!

Jackie,

Please let me know how your next reprogramming goes. My trial was just like your experience now.... I had a hard time getting the stimulation off of my legs and feet and actually stimulating the back area. We made some adjustments during the trial that really helped. But when it came time to do the permanent implant the Neuro placed the leads somewhat higher in my back (T8-T10) to try to accomodate my area of higher (L1-L3) pain.

I think patience is the key...... I am preparing myself for multiple trips to the Dr's office for reprogramming until they get it right. At this point, I am committed to see this through.

Keep in touch.
Ms CJM