St Jude Neurostimulator UPDATE

Hi Disley!! You are one special gift to me and the forum, my prayers are also with Elle it's absolutely horrible living with pain. I similar to Elle never said what my problem is but I have several torn nerves in which causes severe pain, semi walking, standing and sitting, have been in pain management for procedure called radiofrequency ablations which is truly horrible, have been told nerves will regenerate them selves but my post and problems have been pain doc is trying to push me to have the scs, I once again have been told this procedure is primarily for failed back surgeries or chronic back pain that why I'm having difficulty in knowing what to do. P M doc have told me I would have to have these procedures for the rest of my life that in it self is ( very depressing ) but if they will regenerate and heal them selves, why the need for a scs, want me to try scs from too different companies, so confused and I Thank you so much Disley you just don't know you stated in one of your post to me not to do it if I'm having in other words something implanted in me and can't take it off like a band-aid . So I don't know if Elle has a stimulator but it sounds so dangerous to me, already having nerve pain and how you say the procedure is done and they hit a wrong nerve and total paralysis set in then I'm sure I'll never forgive myself. If I see more doctors to get more understanding then they will tag me as Dr hopping just praying and looking for the right thing to do. If nerves regenerate themselves what is taking so long have been years now, if the scs is for failed back surgeries or chronic back pain then yes I'm a mess and don't know what to do. I really feel for Elle and all of us pain is no fun what so ever trying to stay positive going into depression can't help would be just another problem, so I graciously ask for your prayers also. Forgive the length of this post just so much going on in my head now and want to be able to do the right thing Thanks, Joy

Hello Joy

I certainly will put you in my prayers. 

I have to say my SCS was suggested for, as I said, nerve pain in my lower left leg. 

It really is a decision you must make yourself.  The SCS can be brilliant but also, as seen in this site, cause horrid problems. I am sure there are thousands of success stories out here. 

I really do think I will have mine removed though, if it is not going to cause too many more issues. It was really great to start with. I am so tired and sore. It’s been 3 months since it was the-sited and should not still hurt like this.  It’s still controlling my leg pain though.  I am glad you are really making informed decisions about this Joy xxxx

Good Morning Disley, well I Thank you for your confidence in me as to making an informed decision , not so sure about that just trying to get as much info as I can from real people who have actually gone thru the procedure. Myself I actually feel as though I'm not really cared about when it comes to my Dr's to me it feels like a money game for them, but for you, others and myself it's called life.. Believe it or not I have a special friend and Aunt who have been in pain for owner 30 some odd years, Aunts pain so bad she can barely brush her hair. So with your statement on having yours rrmoved....I think that may have possibly have made my mind up. Opioid sure that will give some help but really will have to grow strong and tough because eventually they will stop working also not doing a fantastic job now have to take to many just to ease the pain. But with your decision my entire best, hopes, and dreams prayfully will be what is the best for you, Thanks for everything Disley xoxo!!!!???😍😙 Joy

Thank you so much Joy......

I do not regret having the implant at all, and I do still believe that its different for everyone.. I was doing really well until I had it re-positioned 3 months ago...  Did you say in a much earlier post that you actually had the trial done. 

i feel you must discuss ALL of your concerns with the Specialist before you make your final decision Joy.. I know you said your Drs were unhelpful, so what I suggest is that you write down all the salient points and tell him/ her how much research you have undertaken and the people you have 

spoken with ...So many people are uninformed about their medical problems (I certainly was) and once your Drs realise you have some real knowledge concerning the SCS, they are much more likely to want to really engage you in a  “grown up” conversation regarding the implant.  Lets just hope I do not end up with egg all over  my face after all this “big peoples talk”... haha

Having said all that though Joy, you are well within your rights to find a Dr who WILL listen to you...

that is dreadful about your Aunt....30 years is a long time to endure chronic pain...I agree that Opiates are not the long term answer.   My Specialist had to go Overseas for a conference so I went to my GP to ask for something for the pain.  I was given Gabapentin and Targin (morphine). I will only take the latter if the pain becomes too extreme bjt the Gabapentin nearly sent me crackers....I was ready to

jump off the nearest cliff so I stopped taking them. 

I think one of the issues with wanting to  try the SCS is the prohibitive cost for most people. I  was “lucky” to have been considered eligible by the insurance Company who covered the  Employer where I had my accident. 

 

I have had a tough 24 hours..sleeping mostly....still not as bad as most of the people of this site, but I just know that the way the SCS is positioned in my abdomen I can only envisage continuing problems.  However, I don't yet know how bad the surgery to remove the little “sod”  will be.   This Wednesday will hopefully answer my concerns.  

Sorry if this has been repetitive Joy but my iPad keeps  jumping....

Please take care Joy and everyone 

regards

Disley 

Sydney, Australia 

Good Day too you Disley!!I'm happy to know that you are eligible for for for consideration from the insurance co, for a change it's great to know of good news seems hard to come by these days. No egg on face if so hopefully it's a boiled egg ( lol ). To answer your question yes you did read where I had the trial done stayed on four days but had to have it removed because it was being held on by tape that had latex in it which is in my records I'm allergic to latex. The trial was fine but the situation was I do know the pronged were placed in my nerves in which made the pain so much better. Now my situation is that I say they are using me told by two docs it's for people who have had failed back surgeries or chronic back pain which neither am I, I deal with chronic nerve pain so my thoughts are why do I let any one remove some of my spine to put the scs with a paddle in when those two situations I thankfully don't deal with or do I do it and they or it can possibly control the nerves pain.....this is why I have such a delinma. Well I go back to one of the doctors this Wednesday and I will voice all my concerns and still need to know if the insurance will cover the procedure knowing I have not had failed back surgery or chronic back pain. Awww to much to think about with pain that's not going anywhere , today I think I'll try and do like you just try and rest and sleep which is hard to do because pain finds it way of awaking me. Still have time first find out will insurance help me then that will help me with more time on really making an informed decision and once again speak with another doctor that does not seem to be on a playground playing with my health, Joy

Y’all just perked up my day. Thank you for caring. I do have the St Jude Neurostimulator. I am 35 and 2 summers ago my lumbar discs just blew up. Surgeon blamed it on years of cheerleading but it could have just been physics. Since that discectomy, I’ve had a couple fusions and another discectomy. Removing the fragments was most important and immediate relief, but the chronic pain from scar tissue and reherniations plus the amount of nerve damage was too much.. so I had the St Jude implanted June 2017. Now S1 is ready to pop as it is compressed and protruding/compulsion.  I am so exhausted. I am going from Perc 10, Ultracet, and Neurontin to a patch and XR pill next month (plus a stimulator). Simply trying to prolong this 5th surgery as long as possible as it will be #5 in 2.5 years. It’s not in my nature to surrender or accept disability, but I am close.

Disley, my lumbar discs blew up 2 summers ago. I do have the St Jude. I am 35 and the stim helped right after but I was on massive  meds, too. Now my L5 and S1 need surgery. Couple fusions and discectomy plus stimulator and this?! I am losing fight. It’s when I get in so much pain that I actually get angry enough to get stuff done. This isn’t brain surgery, which btw my neurosurgeon is a brain surgeon. Why can’t this just be fixed so I can act like the cheerleader I was bf the injury? Without percs and now patches I can do nothing. Which means I can do stuff now just as long as I am “high”.. help.

I agree with you “AAA”, this has really helped me to. I have learned a lot from this site.   I am sure for those of us who face an uncertain future with our various “ET’s”, there are, I dare say, thousands who have not had these problems. 

One of the biggest factors I gave noticed on this site, is the total lack of assistance patients seem to be getting. I don’t know if that is worldwide, because everyone other than myself seem to be from the USA. I have been really shocked by some of the reports that I have read.  This little Alien is $A40,000 so one has the right to expect a little more than “Oh really, I haven’t heard that happening before, here is a clip to watch to try and work it out for yourself “.....which is what some of you have experienced.  

I have been fortunate (touch wood) to have an incredibly empathetic Surgeon, (who incidentally does several of these ops a week) but I am at that stage in my life where, although I won’t start ranting and raving and use threatening behavior (only in my head !) I will not settle for something if I know it is wrong.  It is in the Surgeons best interest to ensure things go smoothly. St.Jude, or ABBOTT as it is now known in Australia, don’t want bad publicity.  None of you must take no for an answer when you know absolutely that something is wrong.  

Seriously, if you get fobbed off by a Rep, report it immediately to the Head Office. Insist on speaking to someone in Authority.   This is our health st stake. 

I am just shattered that this little “ miracle” has started causing problems for me.  The irony of it for me is that I chose this to help with nerve pain in my leg and I now have nerve damage in my lower back ! Ho hum. 

Watch this space.  

Elle and Joy you are in my thoughts and I truly believe that together we may be able to get things looked at by the Company regarding these serious problems. 

Good luck to us all....... Happy Sunday kids ! 

I wasn’t sure where within this Duscussion to post the following; I need any and all suggestions, advice and insight to health insurance. I have none. As we all know, disability insurance takes Congress Motions and a World Wars for approval. This will be surgery #5 in about 24 months as stated before but I have lost health coverage within this time. I haven’t a clue what to do now besides take meds and pray..

Yes! Just got my full attention and fell in love with you!