Mark56

Thank you for your reply. I am glad to see someone has found good PM Drs. to treat them. Also what said about SCS surgeries in general and how serious they really are with risk. I have not found a local PM Dr. take has taken this very serious to date and this is what scares me.

I am looking for a new PM Dr. again and this time I will find the right one for my needs.

Sorry to take this post off subject.

Good luck with what you decide on your SCS implant Tinkster.

I am in the Denver Metro area, Colorado, so if you are anywhere near, I can PM you my doc's information GLADLY.
Mark56

I am worried about having the revision surgery. But at the same time I worried about giving up on SCS all together too. I know I don't have all the answers yet so I cannot possible make a informed decison.
I am going in tomorrow for another injection, hopefully I will have a few minutes to speak with my pm doctor, but he is pretty busy on surgery/injections day so it may be best to speak with him in the office at my next appointment. I do want his opinion about all this. He's a good doctor and was very truthful and very informative when he did the SCS, not like the doctor that filled in for him on Monday.
Did someone say that once the revision is done with paddle leads its not reversible? Also, is that type of surgery generally done the same way the SCS is done, with the other type of leads? Where they wake you up half way through the surgery to test it out and you are not under with general ansthesia? Also, its outpatient, so was wondering with a revision is it the same way?
Thank you again for the replies, you guys are awesome.

I have Paddles Tink, and it was major surgery, not taken lightly, involved general anesthesia, partial laminectomy at T8-T9 through which to place the leads. Whether is irreversible, I do not have a clue, but would not want to go there, as scar tissue would hold those babies tightly in there against the spinal cord.

Caring,
Mark56z

Hurting
I 'feel' your frustration and I agree.....there are just too many cocky, high-and-mighty pain docs out there who are all gung-ho about doing these implants.....collect their VERY large sum of $$ and then basically don't want anything to do with us! They'll even go so far as to incinuate that we just want PAIN MEDS for the sake of having pain meds! .....which goes COMPLETELY AGAINST the song they were singing to us whilst making the 'sales pitch'...and REPEATEDLY stressing that we shouldn't expect more than 50% pain releif! .......So this leaves us hanging. On ONE hand, we are very grateful for the 50% pain relief.....but this does NOT mean that we've been 'cured', nor would we expect that! We KNOW the SCS isn't a CURE!
But they simply get irked when we come back needing revisions and breakthru pain meds......and eventually they'll send us off to a psychiatrist....because we've got MENTAL ISSUES!
There's nothing wrong with getting mental care. Chronic pain and depression certainly go hand in hand. I believe it's a GOOD thing and I've started seeing a psychiatrist....per the request of my pain doc. Why? because he doesn't want his reputation 'tarnished'. He wants me OUT of his hair!
Forget all the speal about the 50% pain relief. He doesn't want to mess with the OTHER 50%.....all of a sudden we become a 'pain in the @@$$' to them.

Ok, I'll shut up.
Obviously I'm a bit 'grumpy'
Not ALL pain docs are like this of course. Mine IS....and it sounds like 'Hurting' has experienced several of these.

Tinkster, you are in my prayers. I'm so sorry you have this decision to make.
I really wanted this to work for you!

Gonna go crawl back in to my hole now

I have been told from 4 Doctors due to my having crps type II I need to avoid most surgeries of any type due to trauma at all cost. I feel Implanting a SCS would cause trauma from placing the leads in the upper back then running them down to where they place the power pack control unit.

I have had 2 surgeries to try to fix the severed nerve in my wrist with no luck. The last surgery they did the block on all three nerves in my arm pit. This block hurt at the very beginning before it went numb which lasted for 4 days. Now I have permanent pain at a level 7 24/7 in my upper arm from this block.

So this is why I feel that having a SCS implanted will cause me more pain in a new area just as the block did.

When I went through PT after surgery they had me try a Tens unit. I tried it for 4 days and had to stop because it sent my pain throughout my entire arm to a 10+. After trying the Tens unit I cannot take any type of vibrations. It does not matter if it is sound or from riding in a vehicle. This tigers off my pain from a 7 that is my average level to a 10+ for hours.

So this is why I am not very gung-ho about even trying the tempt unit I just don't need more new permanent pain. And my back, hand, and reg Drs. tell me no stay away.

For many people these SCS implants work great and should give it a try;

As I keep tell these PM Doctors I know my body better then they do and I have tried many things that they asked of me and I am done being a test dummy for them. Only after in writing from one of these PM Drs. guaranteeing me that I will not get any new permanent pain in the area that they implanted the SCS I am done talking about this treatment.

Not one of these PM Drs. ever told me about possible complications when I asked. Need I say more. All I can say is it is about the mighty dollar. Now that I have made myself clear about the SCS the PM Dr. could care less as to how he treats my pain. I told them that there are other ways to treat my pain that has not been tried yet. They don't want to hear this.

I will keep trying to fine that right Dr. that is willing to do other cost effective treatments first.

I talked with my doctor today. He said that the doctor I saw monday supposedly is not all that experienced. Anywho, he said we will figure things out, also said the leads did not move, good news there! But said he can move the battery to better location.
The rep was there too and he did re program the stimulator, hope it helps.
Happy Easter everyone

Hi Tinkster,

I'm new to these boards and i'm so happy to have finally found a site where there are so many like minded people that all more or less have been through the horrors of chronic disabilitating pain.
I've just been reading your post and i'm wondering how things are for you now, did your Dr find a solution to your problem? God love you, you've been through a horrible time. I had my SCS implanted last Dec and I'm doing very well although things still haven't settled down and I probably will need another implant. I've always found the site in my abdomen a little bit annoying if I bend and I have to shift it do a different spot but thankfully no real pain there. My heart goes out to you, why would your Dr put in a replacement that basically had no experience and no business speaking to you about something he was clueless about, it certainly sounded that way.
Anyhow, i'd love to know how things are for you now.

Thinking of you...
Sophie

Well, I had the revision done, that is they moved the battery from one site to another. Its in my stomach now and my back already feels better, even though the incision is a bit sore it still feels so much better. The surgery took a little over two hours. I am just glad its done!
I hope I can gain some quality pain relief from the SCS now. My stomach is sore but I expected it to be post op.
Thanks for all the replies and kind words, they were really appreciated.

That's great news tinkster about your revision, hopefully it will continue to improve for you,

With every best wish,
Sinead