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More SCS Issues!!!

Jerome001Jerome001 Cocoa Beach, FloridaPosts: 118
I have to laugh otherwise I'll bang my head against the wall! I've started a couple of topics related to my SCS tests and implant and the revision surgery that moved the SCS battery from my back to my abdomen and added a connection box because the implanted leads were to short to reach the battery now. Unbelievably, the connection box moved across my back and ended up pressing on the base of my spine just like the batter did back in May or June. I had to deal with the pain for about 3 weeks while some staff were on vacation and for a surgery slot at the hospital. Two weeks ago today (9/18), my doc moved the connection box back to about my left kidney and on my waist (pain in the bum because it is right on line with wear my trousers and shrots waist band). Of course, he turned off the SCS while he was operating and left it off until I had my first follow-up appointment last week Monday (9/25). I tried to turn the SCS back on last week and the SCS displayed an error message of a corrupt file. Yesterday, (10/1) I had my second post-op follow up and a St. Jude's SCS rep was there and for well over an hour she tried to turn on my SCS but she could not get it to respond. Conversations with my doc and the St. Jude's rep at the corrective surgery on 9/18, determined that they did NOT disconnect any wires when they relocated the battery and they said they tested my SCS and confirmed it operated correctly and then turned in off for my recovery. At my follow-up yesterday, the doc took several X-rays with his equipment and he and the rep could not see anything obvious. I am on stand by to see the doc and the rep again on Thursday (10/4) after they have had a chance to study the x-rays and try to determine why my SCS does not work.

So, after the initial implant surgery in February, the relocation of the battery off my spine in June and the correction of the battery 2 weeks ago, my SCS does not work. To add insult to injury, the relocated connection box is just under my skin directly under 2 incisions the doc made when he corrected the battery position 2 weeks ago. With the edge of the connection box gouging me at the incision sites is very uncomfortable and it is painful to sit in a chair and very painful to drive myself to these medical appointments. Thankfully, I have a Temperpedic foam mattress so I am able to find a position in bed that enables me to sleep for 3 or 4 hours.

My doc says he has done hundreds of the SCS implants using all SCS versions from all the manufacturers and I am the first patient to ever have SCS equipment move one time and he is shocked that it moved again. I'm not out digging ditches or running marathons! The most strenous think I do is taking the stairs in the house! LOL

When I found out the SCS doesn't work I just shrugged my shoulders and I'm still not upset. It seems the only luck I have is bad luck and my former colleagues joke with me that bad luck is all I ever have too. Oh, well, such is life I suppose. Definitely am NOT buying lottery tickets any time soon. :) Wishing everyone a pain free day, Semper fi, Jerome


  • Don't know what to say its hard to believe. Now I wonder how much extra scar tissue you are going to have. Have you met other people in the office that have had them installed? I would be inclined to mention to the St J rep that you feel like writing a blog about this and all the problems and just maybe they will do something for you besides getting down to the problem. I hope they find a answer for you soon its getting beyond crazy now

    I almost afraid to say good luck
  • Jerome001Jerome001 Cocoa Beach, FloridaPosts: 118
    edited 10/03/2012 - 12:43 AM
    Appreciate your feedback Rick. My pain doc does the surgeries, injections, and most all of the pain management procedures and he has been practicing about 18 years. My internet research found that he is seen as an expert and leader in the SCS implant specialty but no, I have not talked with any of the other patients that have an SCS. I have exchanged notes and comments with several people on these boards though. I had not thought about making the comment to the St. Jude's rep but it sounds like a great idea. The reps are responsive and seem willing to take their time with me when we meet. The doc says he thinks I have the movement issues because I have so little fat in my back (plenty in the abdomen though! :) ) I am quickly getting to the point where I will tell him to just remove the SCS but I really do not want to be without it because it does help. Oh, yes, my back has so many scars it looks like I've been tortured, well, maybe I have! LOL

    Have a good day and thanks again. Jerome
  • Wow that sucks, Sorry to hear that, I have mine on the right side in my butt, Well not in my butt just under the skin of my ass,
    Maybe you should buy a lotto ticket, Bad luck usualy only last so long so might be your time to win !

    My leads aint doing the job for the nerve pain as it seems to be in the wrong place, Very hard during the implant to talk and tell them where it feels best when you are half out of it, So when it heals up you realise nope not good enough and having to move leads is another surgery i been avoiding as it gets old,

    Best of luck to you hopefully they can work out the problems and you win the lotto,
    Whats worse that can hapen to ya after all that, Besides having 1 of the leads come out your butt hole, git - er -done
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • RickilalasRRickilalas Posts: 559
    edited 10/03/2012 - 6:40 PM
    I quit playing the lotto because I felt even if I won it would not change my life. Well OK maybe a 60 sailboat to lay on all day instead of my bedroom so maybe it would be OK
    I wish I had some answers for ya but I don't. You might try and talk to the rep off the record and see if he thinks some body else might be able to fix it. My PM that did my test told me never let a PM do the install always use a spine surgeon. It would be interesting to see a break down on how many are done by each and if it has any difference in the out come.
    Hang in there something will happen soon maybe your body is rejecting everything
  • Remimd me not to walk behind you. No telling what I would see. LOL
  • Jerome001Jerome001 Cocoa Beach, FloridaPosts: 118
    You guys are too much! Thanks for the laughs! I have talked with some of the St. Jue's reps and the main man I work with has a good opinion of my doc. Your comments have me thinking though (bad move all around) that I should contact St. Judes directly and see if they have and will share any statistics on the the SCS issues encountered. BTW, my SCS is still off too! I'm supposed to see the doc and the St. Jude reps Monday - waiting on the call with my appointment time. My indifferent other says that the whole thing is idiotic, says the doc is incompetent, and I should have the SCS removed. I'm not ready to be quite that drastic though - yesterday and today I've had some pretty rough spots that the SCS does help with, it does not eliminate the pain but it is a distraction and, at this point, a distraction is a good thing.

    Thanks again!

    Semper fi, Jerome
  • Jerome001Jerome001 Cocoa Beach, FloridaPosts: 118
    I met with my doc and the St. Jude's SCS representatives yesterday to try to get my SCS working - it is a no go! So, my doc says we have to replace everything because they cannot determine the problem until they can put hands on the various devices and the connector. He says he thinks he can put the leads back where they are now but attach the 90cm wires so I can avoid having the connection box (unless they run into a problem and he may have to use the connector but he is hopeful).

    So, now I have to do another trial to determine the better placement result - just under the skin or actually into the spine. The doc's office is working on getting the procedure approval. It will be absolutely wonderful to get rid of the connector box as it is very uncomfortable and when it shifts over to my spine then it becomes very painful. My doc and the St. Jude's reps say that I am a "special" patient - LOL! They probably meant unique but I appreciate their sense of humor. And the beat goes on................................... Jerome
  • Jerome001Jerome001 Cocoa Beach, FloridaPosts: 118
    I saw my doc and the St. Jude's SCS reps this past Friday. No luck getting the SCS to work so it has to be replaced. My doc wants me to do another trial where he puts one of the leads into my spinal cord rather that sitting on top as it is now as he thinks I may get better coverage and relief. Regardless, if I want to use my SCS I have to under go another surgery to remove the existing equipment and then replace everything with new equipment as my doc says he does not trust any of it. One positive though, he thinks he can use the 90cm leads and eliminate the connector box which currently sticks out of my back and is very uncomfortable. The doc did offer than my medical insurance company was probably going to have lots of questions before they authorize the new equipment but he thinks it will be okay. Doc also says this is his only SCS implant with these issues and he has done several hundred implants if not over a thousand.

    Has anyone else had these types of and as many issues with your SCS? I miss having the coverage and my pain meds don't quite do the trick so it would be great for the SCS to be working but I don't want to be foolish either. I dread another trial because it is uncomfortable to have it implanted and wearing it with all the tape plus no shower for several days - YUCK!! Then, followed by the surgery which will take a while to recover from. I'm on disability but still....

    I appreciate your feedback. Have a great day! Jerome
  • LOL That I think is funny is I am going to talk to my Pain Dr in December about this and I like you have the worst luck, for example if I won the lottery as they are handing me the check I would have a massive heart attack and die right there just before I touched the check lol

    At that point I would have to say something to St Peter like you could not wait even another minuet lol
  • Jerome,I hope you have things figured out by now.I am in limbo waiting on my appt.I'm like you, when the stimulator works its great but when it doesn't it is the pits.My leads run straight up my spine,paddle leads are between my shoulder blades,battery isin my left hip Arab like yours where my pants hit the WAIS so it's elastic mostly or shirts/dresses. Even then if it rests on the battery it hurts me.Maybe between the two of us our bad luck can become good luck?!nah.....I'm like a bad penny..lol always there and only worth a cent,by itself and it is......best wishes to you and gentle hugs, keep us updated, I am vey interested.
  • Jerome001Jerome001 Cocoa Beach, FloridaPosts: 118
    Appreciate your comments! Yeah, my friends just shake their heads and tell me they have never known anyone with such a long string of bad luck! I figure I must have been Attila the Hun or some similar person in my past lives so I'm paying for that now! Based upon my logic though, my next life I should be as successful and fortunate as Bill Gates! LOL

    I have not heard anything from my doctor's office but I would surely like to get moving with the next steps. My last few days, including today, have had very rough starts where I wake up with the elephant sitting on my lower back and he or she will not get off no matter which or how many pain pills I take! The SCS would be a welcome tool to help manage the pain! Oh, well, better to luck to all of you, especially to Rob61 and mia - hmm, maybe we should all pitch in $1.00 and buy powerball tickets as I have to believe our luck has to improve and soon! Heck, then I could just outright buy up all the SCS companies stock! LOL
  • Jerome
    I wish they had come up with a good answer for you. Maybe this is just a freak incident and if they replace it all things would work out. I would hate to see you walk away from this because it does help alot of us.I would hate to think about doing it all over again so soon but I know I would try again. I do feel they should put you on the top of the list and get something going right now and not later.

    I would ask the doctor if he does other brands of SCS and if he thinks a brand change might make a difference.
    Most PM will use all three of the major brands. Just a idea. If I was you I would be having so many questions going through my head no answers would sound right.

    As far as the future in a crystal ball I do see yo coming back like Gates with all the cash but the only problem is in that part of the future money means nothing. LOL Luck never changes we have to make it.

    Hope it starts working out for you
  • Jerome001Jerome001 Cocoa Beach, FloridaPosts: 118
    You are right, I'm going to go through with the SCS replacement - these past several days have been very hard especially in the mornings so it will be good to have a working SCS again! My doc does use all the SCS companies and he and I discussed this at length and he said he thought the St. Jude's model is my best option as I understand each SCS is somewhat different and he is the expert so I left it to him after we talked and I did some research on the web.

    Yeah, if you have to deal with the pain we have to every day I cannot see how being rich would resolve anything. Perhaps I would not have to worry about drawing disability or retirement but the pain would still be there so other than having more "stuff" and "toys" there would not be other significant differences.

    Thanks again for your feedback, Jerome
  • Jerome001Jerome001 Cocoa Beach, FloridaPosts: 118
    Latest is that the doc will remove my current SCS and implant two (2) SCS at my next surgery on December 6, 2012. This will enable him to place leads at the lumbar and leads at the thoracic with each on a separate SCS. As I have lots of problems in my cervical region who knows what they will do for that! Also, found out last Monday that my company disability insurer will not approve long-term disability for me because I'm about 45 days from meeting the longevity requirement. If my HR had advised me about the requirement I could have worked out something to get me through the additional 45 days. As I cannot work, I don't know what I can do. I'm suppose to talk with HR Monday about what options I may have, if any.
  • Jerome
    Glad to see they are going to try something for you. My lumbar unit covers me from the lower back all the way down except for my left foot. Playing the insurance game now to try a trial with a lead placed lower then my paddle to see if it will hit the foot. I have the sensations in the foot but it doesn't cover the pain so I like the idea of them using two units on you. I woke up in major pain yesterday and could not figure out why and then it dawned on me the SCS wasn't on. Battery was empty so at least I know how much it does help even with all the other issues.
    Just when you think the pain can't get worse you find out it can LOL.

    Did you find out anything on your 45 days needed yet. Can you go back for some very short days maybe?
    Let me know how the double unit goes. My surgeon wants to add another lead to my unit but Pm wants to replace everything and I hate to remove what is working.
    Catch you later
  • As you all know you dont walk through the metal detector at a court house or airport with a scs implanted,

    We filed a small claim case at the court house sadly due to some morons pulling a stunt,
    I have not been to our court house for over 20 years for any reason not even a ticket,
    I hand my medical card to the cop at the metal detector that was given for the scs implant, well i have 1 also for the ADR implant actualy,

    Cop says what you got ? I said well i have it all, What would you like ? I have a nuclear missile under my skin of the right part of my ass cheek i can sell ya for 1700 dollars plus tax its called SCS , The ADR is going to cost you more and you have to remove it,
    Cop says ok go on you are fine !

    I must be out of touch with the court system after all its been over 20 years, When did they start allowing nuclear missiles in the court house ? Or did this just start under Obamacare ?
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • Jerome001Jerome001 Cocoa Beach, FloridaPosts: 118
    Thanks for your responses and it is always good to see some humor in our lives! My surgery was pushed back to December 13 - my doc needed a vacation. Yes, I know he deserved a vacation but it does not keep me from wanting some relief. Sometimes it is hard to remember that our medical care professionals are people too like us and with lives outside of their office or hospital.

    I'm out of options for my disability insurance so I'm on leave without pay for now so no more income - at least i keep my medical insurance (for now) but we are having to use our emergency fund to pay for our necessities - I guess cable TV is an extravagance but it does help occupy my mind so things would be worse without it! At this point, I'm glad that I made the sacrifices so we can have an emergency fund. Thankfully, we only have our living expenses and no long-term debt except our mortgage but it still costs a lot just to get by these days.

    I told my CEO that by I should know by the end of the year if I can return to work. Reality is, I do not think the two SCS' will allow me to go back to work. Even if the SCS' help there is no way they will mask the pain enough that I can concentrate on my work like I need to for success.

    This is so depressing. It's another typical day for me - up since just after 4 AM this morning because I'm hurting too much to sleep or stay in bed. I'm nauseous most of the time these days - it appears that it could be all the meds I'm own but I do have a history of gastroparesis for several years and I hope that is not returning!

    I got my last blood test results and now my liver function is abnormal as my ALT is too high at more than double the high end of the normal range. Nothing to panic about yet but I have to go for another lab test. It is possible that my pain meds are the cause but this news is not something I need to hear now.

    Here is hoping everyone has a good day today. Jerome
  • I go in December 20 for my cervical SCS. So we will be recovering together.

    Sounds like you've been through A heck of a lot. I hope you get some pain relief :-)

    Take care!
  • Jerome,
    I have appreciated your responses from my personal posts and feel your pain with some of experiences you have discussed in this blog!! In fact, I have also had some similar side effects that unfortunately you too are going through :-(. I have had the nausea since my surgery in September which has progressed to the point that my esophagus must be eroding (at least that is the only way I can describe the pain when swallowing, after eating, and just the overall feeling from my throat down and throughout my chest)! Every type of muscle relaxer and Rx NSAID seems to make matters worse! I take Nexium and carafate (that I had from a couple years back when I had my gallbladder removed) but have to be careful with the NSAIDS since I was born with only one kidney. However, after my surgery I was prescribed those anti nausea patches that you place behind your ear, and they really helped a lot with the nausea! It's just a bandaid though masking the real problem so my pain mgmt people stopped prescribing them quite a while ago. I wonder if it might help you as you are going through all of your changes/adjustments??
    I really hope that this new SCS helps you!! The disability part really stinks though! My problems began with a car accident and I subsequently, in a roundabout way, lost my job (my school district was not very sympathetic with the time away from work, trips out of town for doctor appointments, and the initial surgery which led to my need for the SCS. My car accident even occurred on school property but that is a whole 'nother story!). I was not able to receive disability when I finally had the SCS implant and have not felt well enough to be able to work FT again.
    I REALLY hope you find relief with everything you are going through because I am going through some of the same things myself! The holidays is a horrible time to be going through financial stress--at least it is for us since I have 3 little ones and Santa HAS to make a visit this year! I wish you luck with everything and hope this new SCS is successful! You have been through a lot and its time for you to feel better! You are in my prayers!!! A
  • Hey bud just checking in to see what is going on. Did you get anything done on the 13th?
    Maybe Santa brought you something that would help. LOL
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