New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

rena2020
Regular Member


Date Joined May 2010
Total Posts : 42
   Posted 5/9/2011 10:17 AM (GMT -6)   
I just had my third revision done last week, and it was by far the hardest surgery ever.  They moved my paddle up a level and my surgeon had to cut thru so much scar tissue.  I am still not able to get up by myslef yet.  I would like to inform people that when considering getting a SCS implant, discuss with your doctor what are the chances that you will have to have revisions done, nobody mentioned this to me the first time ---  all the were concerned about was getting me approved so they could get their money.  PLEASE ask questions about this.  I am not sure that this will even be the last surgery that I have for this.  Has anyone else gone thru three or more revisions?

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16284
   Posted 5/9/2011 11:34 AM (GMT -6)   
Hi Rena, yes we do have some on here that have gone thru the revision surgery, In fact one of our ladies had it done I believe last week and it was a tough one too. I am thinking she had a paddle put in not real sure on that one.

I am so sorry that you are having such a difficult time and I agree with you, many times drs fail to give us the whole story on these implants. I know this from when I had my pump put in back in June 2005. My dr failed to inform me of a lot of things and most of it should have come from him, I should not have been expected to know this stuff first hand. I honestly feel that if they completely gave the patient all of the necessary info there may not be so many patients opting for these surgeries. Thats my opinion on them anyway.
Moderator Chronic Pain Forum

Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 5/9/2011 2:10 PM (GMT -6)   
Rena, what straydog said is correct; CRPSpatient just had (I believe) her 5th revision to her unit over a week ago. Off the top of my head I do not recall how many years she's had hers now. One of the things they did was replace her leads with the paddle leads this time.
 
May I ask what you had your stimulator implanted for? I know for CRPSpatient and myself, the odds on revisions are high given that is the evil nature of the disease we suffer with that is treated primarily with the SCS unit. Also they state right off the bat that the battery life is good for only about 5 years or so.
 
Usually with a successful trial the try to get the leads in the same place the trial ones were in. In my case, in two days they'll be placing the paddle leads in as close to where my temp ones were; infact my Pain Doctor, who did my temp will be assisting my Brain/Spine specialist surgeon... and he has the x-rays that were done post procedure to show him exactly where those leads were placed.
 
Alot of it also has to do with the surgeon doing your procedure. I've done alot of research in the last few months during my quest to find a surgeon who would be willing to do mine; my leads have to be up near C2, and especially with the paddle leads that's a narrow, risky area to work in. Alot of the problems that occur can simply be caused by surgeon neglegence. But as they tell you before hand, this surgery isn't without it's risks, but then what surgery doesn't have risks?
 
Like any piece of machinery though there can be malfunctions and failures. Leads, if not sutured properly, can migrate with time. Also any trauma to your back can cause drastic problems to your leads, and sometimes require immediate surgery. My doctor told me one gal he knwe with an SCS was in an auto accident and had to go in for immediate back surgery as a result because of issues with her spine and her leads.
 
So please, remember, surgeons and doctors are not always all about money. There are good ones out there as often as there are bad ones. I'm sorry they neglected to tell you about this. I had the bennefit of being able to ask people here before hand, as well as having a neighbor who has one also. I watched the DVD I was given multiple times, I asked a billion questions, I asked for odds on the risks versus the rewards, I even went and found out what the worst possible outcome could be for me if this goes wrong in two days; and I still opted for the procedure as the reward is worth it. As patients we need to remember to be proactive, not reactive. Write down the questions you want to ask, so you don't forget them when you go in for visits; I know I had to, what with having a mind like swiss cheese some days.
 
I'm sorry you had to have a third revision. Hopefully this time everything will stay put in just the right place and you won't need to go through it again, at least not until you need a new battery unit... and hopefully that won't be for many years.

Originally injured 10/26/2007 - Initial diagnosis; Tendonitis
Have seen several specialists; Bone, Muscle, Hand, Neurologist, Chriopractor, Physical Therapist...
Went through a battery of tests, multiple MRI's
11/16/09 finally diagnosed CRPS - Stage 2
Permanently disabled, on Oxycodone and Celexa.
February 2011 successful SCSU trial
May 2011 SCSU implant surgery

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 5/9/2011 7:32 PM (GMT -6)   
Hi Rena. What Straydog and Rhaeven said was correct. I had my 5th SCS surgery a little over a week ago and it was horrendous. My doctor (never mind myself!) are hoping like crazy that things will settle down, but I've been left with greatly altered sensation, additional pain and weakness down one leg. He thinks this is due to the amount of scar tissue he had to cut through to get my old lead out, and to nerve root bruising caused during him getting the new lead into place. I had percutaneous leads initially, and this time my doctor has put in microplates - which work like a paddle but don't require bone removal to get them into place.

I've had my SCS for five years now. My first revision was implantation of a second lead after my CRPS spread. It would have been fairly straightforward, if not for the fact that my first doctor (actually the same one who did this last surgery) hadn't considered that I might need additional leads down the tract...the battery he put in the first time could only take a single lead, so I had to have it replaced. I've since had the perc. leads migrate twice, and this new lead seems to be causing me trouble as well. I'm kind of over it, really *sigh*
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

rena2020
Regular Member


Date Joined May 2010
Total Posts : 42
   Posted 5/10/2011 12:36 PM (GMT -6)   
Thank everyone for your responses. I have my SCS due to leg, ankle and foot pain. They moved it up a level so I would get more stimulation in my feet. When I wake up in the morning, I feel as though I've walked on rocks all night long. So far, the revision has helped that. My only concern is that after he had to remove a lot of scar tissue, I'm experiencing a lot of pressure in that area and my left leg ( the side where he removed scar tissue ) is VERY weak. I actually fell yesterday because my leg just gave out on me. Guess it is just something that I will have to learn to live with.

Again, thank all of you for your input, greatly appreciated

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 5/10/2011 6:15 PM (GMT -6)   
Rena - has your doctor suggested doing any scans? My doctor has now decided as I said that the weakness in my leg is due to severe bruising and the amount of scar tissue he had to remove. When he realised that my leg was so weak though - I had almost no muscle control at one point - he sent me off for CT scans immediately. I'm not trying to be rude, but please don't sit back and take it as something you'll have to live with until it's investigated further.

I hope that your weakness improves. Mine is slowly getting better, so I have my fingers tightly crossed for you.

Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

kat1611
Regular Member


Date Joined May 2011
Total Posts : 104
   Posted 5/11/2011 7:24 PM (GMT -6)   
Dear Rena have you seen anyone for a second opinion? After everything else you've been through you shouldn't have to just "live" with this mistake. Especially if there is someway that it can be fixed, even if it's by a different doctor. If you're interested in a doctor with wonderful references please feel free to e-mail. Either way I hope you feel better!

kat1611
Regular Member


Date Joined May 2011
Total Posts : 104
   Posted 5/12/2011 7:08 PM (GMT -6)   
Hi everybody! It's only been a week since I had my SCS put in and I was wondering about how long until the soreness goes away? I know it's not going to be right away I just want to make sure I'm not causing any extra. It's very helpful, yet at the same time sad to know that there are people with similar problems willing to give their knowledge to me out of the goodness of their heart with the hope that I will get better. The words "thank you" just don't seem to justice to what this website has done for me or I'm sure many others that have found it.

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 5/13/2011 3:21 AM (GMT -6)   
Kat, it will take a little while *hugs*

I'm two weeks today and I still have some soreness - mainly in the areas where my leads were tunneled through under my skin, though the incision in my back is not healing properly and that too is very painful.

Try to take it easy and things should settle over the next couple of weeks *gentle hugs*

Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

rena2020
Regular Member


Date Joined May 2010
Total Posts : 42
   Posted 5/20/2011 7:01 AM (GMT -6)   
I need help!! My third revision was to move paddle from T8 to T9, so I now have great coverage for my feet. I now have pain in my knees, which I've never had. My doctor is going to think I'm crazy! I do have an appointment at Duke, to be evaluated by them. One problem is leading to another problem. My first issue was leg and foot pain. I know my rep can tweak me so I get more coverage on my leg ( the leg coverage went away after revision) but now knee pain!!

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16284
   Posted 5/20/2011 1:51 PM (GMT -6)   
Rena you are right, it seems like you are just fixing one problem only to have a different one crop up. I wish I had some good answers for you but i don't. Just try not to let this get you down.

Take care.
Moderator Chronic Pain Forum
New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, June 20, 2018 2:00 AM (GMT -6)
There are a total of 2,973,638 posts in 326,264 threads.
View Active Threads


Who's Online
This forum has 161076 registered members. Please welcome our newest member, ZacharyHernandez2432.
276 Guest(s), 3 Registered Member(s) are currently online.  Details
Gemlin, Sinmiedo, UC_from_39