She's back.......
 

Hi everyone,

I apologize for being away for so long! I have missed you all and welcome twinmom! I can't believe it's been a year since my SCS implant, with paddle. What a ride! A lot of ups and downs but overall it has been a blessing.
I use to be very active and it's been very hard the past 6 years being a spectator rather than a participant. Although, there were times that I participated but always paid for it in the following weeks. That has now changed! Only a few months after surgery, my surgeon actually told me I could start golfing again and getting back to life! Now at a recent appointment, my doctors said that I have no physical limitations and that there would be no further follow up appointments unless I felt something was wrong or when it's time to replace the battery. I even got the go ahead to participate in karate! HURRAY! Of course, the doctor and rep won't guarantee that I won't have problems if I participate but since it's been a year, the leads are very secure due to the paddle. My only real concern would be for the battery during sparring but I will cross that bridge when I get to it. I need to find (or design) protective gear that has more "padding" around the area of my battery as the standard sparring gear doesn't protect that very well. I guess there's always eating more to gain that extra "padding"! LOL!

At any rate, it won't be for another year and a half before I even would start karate. With working 45+ hours a week, going to school full time, and trying to be a good wife and mother, my calendar is full. Reducing the pain in my legs has truly been a blessing but I think the best part of my journey, to date, is the feeling of hope I now have. I know I won't ever be as active and do the things I did before the pain started (partly due to getting older) but I sure as heck won't go down without a fight! If for some reason the SCS only relieves my pain for a limited amount of time, you can bet that I will take as much advantage of that time as possible. If I've learned anything from my experiences, it's that life is too short and regrets do no good. I want to look back and know that I did everything possible to alleviate the pain because doing nothing gets me nowhere!

I've always loved this saying by Anthony Robbins, "If you always do what you've always done, you'll always get what you've always got." I can tell you honestly that I was afraid of getting the SCS but I was more afraid of not doing anything and realizing that the pain would literally kill me as it was starting to before my SCS implant.

I guess it's time to get down from my soapbox, as I'm sure all your eyes are burning from reading my novel! Good luck, twinmom with your journey. I will try and get back here more often as I truly consider you all family. Consider me the long lost cousin! :Heart:

Indeed I do.

Though when I have my next (5th) surgery (well, 4th for SCS) we may be forced to switch to the wire leads. I am hoping and praying that isn't the case. Will know more on the 28th when I meet again with the surgeon.

Thank you Rogue and Smae!!!!
 

Precisely what the doc ordered by way of commentary for Twinmom! Thank you for getting on to chime in and even for a long lost cousin, that is some wondrous report, Rogue!! Smae, I do understand the next appointment will be a real bridge for you and your doc to cross as you consider your continuing issues, you are ever in my prayers and I have so much hope for you in this LONG life struggle with so many issues for one so young [especially compared to us grey haired folk].

Thank you, thank you, thank you for coming to share with all of us, but especially Twinmom,
Blessings,
Mark56:grouphug:

P.S. Rogue, do you need some foam for your design work? I may be able to scratch some up here or there in our scrap pile. [That is the Inspri scrap pile]

Twinmom and the others that have had a success "paddling" or just wires, congrats to you! It must be nice to find something that helps some.

I, unfortunately, have had the most unpleasant experiences so far with my stim. The first surgery was done on 09/10 and was just the wires implanted with the battery. My device is a Medtronics, so I am not sure if it could be the difference in the manufacturing. The first surgery was truly a failure. Bad migration of the wires, horrible coverage, and my battery flipped and rotated in my side to where it was sticking out about 1/2" (I actually ran into a door knob with it because it stuck out so far!), and eventually the remote or even the Rep had trouble finding it and communicating with it.

In Dec of 2010, I had a paddle implanted and the battery moved. The surgeon told me that the paddle would provide a more direct coverage, and I would not have the sudden jolts in my other body parts like I did with the wires. This hasn't be so yet. I also have increased swelling, and since the installation of the paddle, unfortunately the doctors now believe that the RSD has flared or spread so they started with another series of blocks (which never worked originally) and I had the first one two weeks ago which even with an IV sedative still had more me screaming so loud my hubby and everyone else could hear in the waiting area. I go in for another block on the 23rd, and am very nervous. It hasn't worked yet, so are the risks more serious then the "benefits"?

Also, has anyone noticed tremors after the unit is off that lasts for what seems like ever in their entire body? Do you seem more fatigued? An increase in muscle cramps?

HI
 

Hi Patti Christmas....what a beautiful name :)

Im so sorry to hear that you have had what sounds like a nightmare few months!

I had my stim (leads) implanted in Aug 2010. Its an ANS from St Jude Medical.

When it was first implanted I was advised that to limit the migration of any leads or battery I had to be VERY careful for the first 8 weeks or so. So no lifting, bending, twisting, arms up over my head, or driving.

Was it that you had bad coverage because the leads had moved or just in general. Plus the battery moving doesnt sound as if it was anchored in too well. Mine is in a pocket of sorts plus I know the leads were anchored with some stitches to keep them in place as much as was possible, until scar tissue builds around them to hold them permanently in place. Well thats the theory behind it!

I cant believe that they then put paddles in:eek:and your still having problems. How awful for you. And now to think that you have to have blocks done again, Im so sorry it just hasnt worked out for you as well as it should.

Was your trial a success? did you get good relief from it?......just wondering because if so how could they get the implant so wrong.

When I turn off my stim, which btw is very rare, I do get that tingling feeling for a time. I was told by my Dr that this was normal as the nerves would be still stimulated.....but as I say I dont have it off that much so dont really have that sensation you mention.

As regards fatigue, well Ive Failed Back Syndrome, so my lower back and legs are my problem. The stim is great for my legs but not so much for the actual back pain. One thing though is that I am more RELAXED now with the Stim as I feel at times Im been massaged. My legs are more relaxed while Im lying down and its a good feeling I get.

It does sound like you are having a terrible time of it and Im so sorry. I hope that these next injections will help you. But surely you should go back to your Dr and Rep and see if there is something else that can be done to rectify your problems with the stim. I know Mark has paddles in his back and his story is just amazing you should read it.......I know everyone is different too..

Take care

Jackie :)

Dear Patti
 

Your experience brings ache to my heart for you that with so MUCH the right combination still has not come into being for your needs. Yes, I have paddles, and I was exceedingly careful even when in post surgical physical therapy with the bending, twisting, reaching or arms over head. I find that I am still practicing that mantra, although since my implant was June 30, I could probably become much more relaxed. I've ridden my bicycle, although when we recently moved, I was NOT ALLOWED to lift a blithering thing. I watched, when given my body strength I used to be a part of the whole affair.

Despite being tempted by my surgeon to turn off the unit in order to determine whether the parasthesia effect continues for a time as he has been told by others of his patients. I just have this niggling fear that were I to "turn it off" it may not come back on again, thus, I run it 24/7.... oh, that reminds me of my need to recharge right now [thank you for the reminder, might have slipped my mind had I not been writing to you].

Anesthetic was used each time in the OR when I had any fluoroscopically monitored injection procedure. It was the torture of discography, epidurography and CT Myelogram which had me screaming to high heaven then sobbing. I pain for you in your forthcoming procedure, lots of empathy here........

I am with Jackie in wondering whether the thinking heads have all put their noggins together in a joint effort to determine what is gone wrong before poking or opening you again. Too much pain. Much study and discussion to be done I'm a thinking......

I'll pray for you if that is OK, for sure,
Mark56:hug:z:smileypray:

Thank you for your kind words. It is definitely fine to say a prayer:). Even though I was seen by one "pain clinic", I had been seen by 4 different doctors, and an outside orthopedic surgeon who surgically implanted the paddle, leads and corrected the battery implant.

Since the epideral injection a few weeks ago, my husband has intervened and insisted one doctor and only one doctor see me. The clinic in turn responded by saying that one doctor, one nurse, one P.A. and one Medtronic Rep will see me at one location. There has been a total lack of communication because of the different doctors, different symptoms being exhibited at the time, etc. There has even been a few prescription confusion on their part, as well as a few scheduling time/location errors. Hopefully, this will help resolve some of the problems. He also told them that if they feel I am too complex for them, to refer me elsewhere. He was very insistance, so we shall see.

I have a friend that has actually been talking to me about a heavy metal toxcity screening. She has suggested that I look into this, and I done some "internet" research in regards to this and I have found that it can create symptoms similiar to RSD and affect the nerves. I have contacted my insurance to confirm coverage for this as it is concerned "alternative" therapy, but should the cortisone injection on the 23rd not work, I feel that this might be something to try (even if I have to go out of pocket for this). Has anyone looked into this? Please let me know if you have. Again, my paddle isn't always a direct or in the correct spot, and I still have to do a lot of moving. This could be due to the swelling that is still present, but I really don't know.

Mark, how long was your recovery? I had this surgery on the 2nd of December, extremely careful about moving, etc, so I just don't know why it is still as swollen and sore. I know that the doctors have said the RSD will affect the healing time, as well as every person is different.

Hi Patti
 

Wow, hard question, how long was recovery, since it has been configured of multiple steps. The usual two weeks wait to program, the six weeks wait to lose stitches, the multi-week wait to start physical therapy [around 12 weeks], then the withdrawal scenario from the pain meds, for that was one of my significant goals [One of the most yukky and took a couple of months], then the continued strength re-building through pt, THEN a wild ride through depression [described on my thread]{I am much better now}:).

I am so glad your husband is acting as advocate, my wife did for me, and proactively pushing your caregivers toward a team of care for your case directly. That is significantly positive. Same thing I have had for years since my wreck.

Now I know nothing about the heavy metal toxicity screening, so I am not one bit of help to you there. When Rae gets back, or maybe Pooh can chime in as she is a nurse we can get suggestions there.

Well, gotta go to a recital, should be fun!
:hug:Z
Mark56 PJ

Enjoy the recital! My doctors have not even mentioned the physical therapy. Nor have they started really to change my medications. The only thing they have changed was the pain meds (from vicoprofin to vicodin). I am currently on 90 MG Cymbalta, 200MG Lyrica, 100MG Celebrex. I can't think of the strength of the Ambien (at bedtime only), as this has really been the only one changed regularly. They have changed it from Ativan, Klonipin, and I just recently tried Remeron (which was a nightmare in its own). I also take 7.5MG Vicodin every 4 hours. I have been trying to stretch the time between the Vicodins, but somedays I really pay for it later.

I also have the Lidocane patches (which absolutely kill being put on and removed), as well as the ointment. I also have another patch similiar to it, but it also is awful to apply and remove. I use the ointment once it gets awful, I just hate being touched.

I am actually learning a lot on this website, especially the steps used/taken in treatments. I think I have a lot of questions on Wednesday for my doctor. Again, I think that due to lack of communication between doctors and locations, that some things may have gotten missed.

I also believe that the length of diagnosis on the original accident injuries, that this has played into my recovery. The way that my orthopedic surgeons also failed to communicate and/or failed to schedule surgeries so that I was "down" for less time also played a factor. I had practically yelled at the ortho doctors to talk - they were in the same office - and still they staggered surgeries so that once I was starting therapy prior to one surgery, it was time for another surgery.

I am off to read more and to do research on my own to present to my "specialists" for Wednesday. Thank you everyone - this site is awesome!

Patti I hope you can get yourself sorted out on Wednesday. There is indeed a huge amount of information on this website so you will have lots and lots of research to do and lots of questions also for your doctors.....



I too have the Lidocaine patches. I use mine 12 hours on and 12 hours off.....I find by the time the 12 hours are up the suction on the patches isnt as bad......Can you use some cream to help alleviate the pain from taking the patches off?


Good luck on Wednesday Patti

Jackie :)