[scubaforsythe]

Hi all,

I have not been on here in quite some time, been busy trying to get this under control. I have missed reading how everyone was doing, and all the good info I would get every time I would log on...

Here is what is going on with me, and some questions, if anyone has any info???

I have had a few blocks done, and they helped for 4-5 days, then a switch would go off and the lava flow would begin again. At one point, my pm had me doing a block every 3 days, for a total of 3 blocks in a row. That was miserable and I wouldn't suggest it!! The pm believes because I did get some relief from the blocks, the SCS implant will be beneficial to me, and may allow me to lower or even eliminate my Lyrica and allow me to get back to some kind of work.

My issues, concerns, and questions to all of you are:

1. I'm partially paralyzed on my left side due to a stroke at age 7, so somebody messing with my spine, putting something electrical near it, kind of gives me a "OMG WHAT, faint.... pause", so saying I'm scared is putting it mildly.

2. Does this thing last, if it doesn't, will they take it out??? I have had nightmares.... all I'm saying...

3. I'm off work (a workers comp case, RSD was diagnosed shortly after surgery to repair my shoulder), because the RSD takes away my only arm that works, and even typing this, has been a challenge, the RSD has spread to my face (right side), what if this only works for awhile, and quits after I go back to work.....

4. I'm scared, I'm sad, and I really don't want to do this anymore!!!

to all

[-Spike-]

Originally Posted by scubaforsythe

Hi all,

I have not been on here in quite some time, been busy trying to get this under control. I have missed reading how everyone was doing, and all the good info I would get every time I would log on...

Here is what is going on with me, and some questions, if anyone has any info???

I have had a few blocks done, and they helped for 4-5 days, then a switch would go off and the lava flow would begin again. At one point, my pm had me doing a block every 3 days, for a total of 3 blocks in a row. That was miserable and I wouldn't suggest it!! The pm believes because I did get some relief from the blocks, the SCS implant will be beneficial to me, and may allow me to lower or even eliminate my Lyrica and allow me to get back to some kind of work.

My issues, concerns, and questions to all of you are:

1. I'm partially paralyzed on my left side due to a stroke at age 7, so somebody messing with my spine, putting something electrical near it, kind of gives me a "OMG WHAT, faint.... pause", so saying I'm scared is putting it mildly.

2. Does this thing last, if it doesn't, will they take it out??? I have had nightmares.... all I'm saying...

3. I'm off work (a workers comp case, RSD was diagnosed shortly after surgery to repair my shoulder), because the RSD takes away my only arm that works, and even typing this, has been a challenge, the RSD has spread to my face (right side), what if this only works for awhile, and quits after I go back to work.....

4. I'm scared, I'm sad, and I really don't want to do this anymore!!!

to all

Welcome back! All of us are glad to see you. Like you, I was afraid of them inserting the Spinal Cord Stimulator, not for the same reasons as you, but nonetheless fear is a very real thing for some of us when it comes time to ponder the thought of someone putting anything next to our spines surgically.

I am certainly no doctor, but, what I found out through my experience was that the surgeon that I had was the ultimate professional and really was quite good at his trade. My SCS test was a failure, but it was not due to my surgeon's work. And I would not have the same fears now that I had then, if it were necessary to do the trial again.

In my very unprofessional opinion, your fear is very legitimate and your situation is rightfully sensitive. I would encourage you to speak to the one doing the surgical work and relating to them exactly what your hesitancy is due to. She or he (your surgeon) may provide you with the soothing answers that you rightfully deserve.

I would also like to add that the removal of the lead that is placed next to your spine is very easily done and was not painful for me when my surgeon removed it.

One last thing, the surgery for the trial is more easily recovered from than the actual implantation of the permanent SCS. The permanent SCS means that there are objects placed beneath your skin that must be surgically implanted. This makes the recovery time from the second surgery longer.

I only went through the trial, and I know that there are others that post here that have had the permanent surgery. I hope they will chime in here, since some of them have shared with me how glad they are that they followed through and had the SCS implanted. Yet, it must also be said, there are also some that post here that did not have as good of an experience. Their input too may be beneficial. As for me, I am glad that I gave it a shot, even though mine was unsuccessful.

IMO the SCS surgery is a significant event and needs to be well thought through prior to saying yes to the actual trial. Ones confidence in undergoing the procedure is paramount to it's success. I wish you well.

[catra121]

I think any treatments need to be thoroughly researched before you decide anything. Personally...I will never get an SCS implant because of several factors.

1. I am very prone to spread and experienced spreading after a lumbar sympathetic block which is a minimally invasive procedure. I also experienced spread internally to my abdomen despite the doctors taking some precautions when I had a c section. Based on those experiences...for me...it seems almost a guarantee that an SCS would be bad news for me from day one.

2. Most of the info I have read says the SCS helps RSD patients who get relief (and not all do) for only 3 years max before the relief stops, compllications arise, etc. That's a VERY short window considering the risks...and not one I personally am willing to take.

Those are the biggies for me. Some people have had good experiences with the SCS and even with it needing to be removed or turned off after several years still say they would do it again. It just isn't for me. There is an SCS forum here on neurotalk...like in in one of the sticky threads at the top of this forum. If you do a search you will see a lot of feedback about the device both positive and negative...but I really strongly suggest reading through as much as possible to make an informed decision. Too many people are often influenced by their doctors and the sales people about all the positives and don't really get told about the risks and the other side. You need to make the decision that is best for you based on all the info you can find. I hope you are able to find something that will work for you...whether it is the SCS or something else.

[mama mac]

HI! Welcome back.

I agree w/ Spike and Catra that you need to gather a lot of information before making the decision. It's a difficult enough decision for those of us that do not have the complex medical history that you have. I would suggest talking to more than surgeons because many surgeons want to do surgery. Maybe include the opinion of a neurologist, trusted PCP or another doc you trust. I have made the decision no for now on the SCS. Something may happen in the future that changes my mind, but for now not worth the risk. I have had two different pain management specialists want to do the trial. I will try it only after all less invasive options are exhausted. For what it's worth~mama mac